SPMind, Share Love, Share Experience, Live with Disease TOGETHER

During the disease progression, treatment and self-care may bring about anxiety and worry. Through the wealth of patients’ stories and articles of HA colleagues in “SPMind”, which revealed disease combating experience with courage and willpower, patients are encouraged to live with their diseases positively and smartly.

Patient and Related Organization

Patients Can Lead a Good Life
Patient from Alliance for Renal Patients Mutual Help Association

She has been sick for 24 years.  With deteriorated bones, impaired hearing and organs, she says only her brain is still working well.  She is a wheel-chaired person now but her life is not boring.  She communicates with the outside world by computer technologies, shares her cooking skills with friends…. Her motto is: there is always a solution to every problem.

When the chairman of the Red Bean Society asked me to write about my experience,   I hesitated. I thought that all patients wrote the same things, like how they suffered from their illnesses. But then I thought if nobody was willing to do it, where would patients get encouragement from? So I decided to tell my story.
I have suffered from illness for 24 years. I used to be a clever, pretty, active girl.  Now I am a sick woman. My health has been disrupted by diseases. I have been suffering physically and emotionally all these years. My organs such as heart, liver, spleen, lungs and kidneys are impaired. Only my brain is still working well.
With a weak heart and deteriorated bones, I have become a wheel-chaired person.
I could not accept it at first. I used to actively participate in voluntary activities such as visiting patients and participating in the Alliance’s work. But then I could do nothing. I once felt sad and lost faith in myself. I did not want to be a burden on family and friends. I should appreciate the housework assistants. They help me a lot, like going out, shopping, cleaning and doing housework. Many patients also benefit from their help.
I have impaired hearing too. My ears were infected once due to low white blood cell count. After surgery, I could only hear faint sounds. Now I can’t talk over the phones. It has had a significant impact on my daily life. Thanks to the advanced technologies, I can communicate with the outside world through fax, internet and email. Still, it has changed my life and the way I contact with my friends. Since life is busy, people don’t have the patience to communicate with me by writing. I can only guess what they say by lip language. It may easily lead to misunderstanding. I go into a lonely world from a busy one. But I have not given up. I am disabled, yet I am not useless.  I will let the candle of my life burn until it goes out.
I remember when I was in hospital, a young doctor comforted me and said that there would always be a solution to every problem. It has become my motto. I continue to live optimistically. Now in my spare time, I knit scarves for the old people in the elderly homes. I also share my cooking skills with friends. Quiet life can be colorful too. I once read an article about a splendid housewife. She goes to the bakery shops to get the leftover breads and send them to the poor elders in her district everyday. She has won a community award for her good work. She leads a good life. I have come across many renal patients who are active volunteers and helpful. They also lead a good life, despite they are sick.
(This is the translated copy from Chinese version)


Be Happy Everyday
Mr. Kwok-hung CHAN

He is a retired policeman.  After retirement, he worked as a security inspector until he got diabetes.  He fought against the disease optimistically.  He has joined the patients’ mutual help association, participated in interest classes and voluntary work.  Such activities have driven him to live happily every day.  He continues to live life to its fullest.

I retired from the police force after 28 years of service. Soon after that, I did not want to fool around, so I went back into the work force as a security inspector. One day in October 2004, while I was driving at work, I felt dizzy all of a sudden. I rushed to the Emergency Room. The doctor there did not find out the cause of my dizziness. He just told me to go home and take some rest. Yet the feelings of dizziness continued. So I went for a physical examination and was diagnosed with diabetes.
Since then, I became irritable and isolated. I was reluctant to communicate with others and I felt blue. I was referred to a psychiatrist, who confirmed that I had unconscious intention of suicide. During this time, I met Nurse Lin at the North District Hospital where I went for regular consultation of my diabetes. She explained patiently to me about my condition and broadened my knowledge of diabetes. She also encouraged me to live with the condition positively. Through her, I learned to relax and participated in various interest classes. I also became a Christian and got spiritual comfort from the religion.  
Together with a group of diabetic patients, Nurse Lin and I founded the Diabetic Patient Support Group at Christmas, 2006. I continued to participate actively in various activities, such as dance class, cooking class and charity walk to raise funds. Moreover, I got acquainted with other diabetic patients. We supported and encouraged each other. All these have driven me to live happily everyday. I am also a member of the Personal Emergency Link Volunteer Network, through which I understand more about the feelings of other patients. I know that they need help. I often share with them my experience. I also encourage them to live with their illnesses bravely and plunge into an active life. I just hope they can be happy every day. 
(This is the translated copy from Chinese version) 


Life Inspiration
Patient from Alliance for Renal Patients Mutual Help Association

He was diagnosed with terminal renal failure when he was just 21 years old.  He received numerous treatments, went through critical times and carried on.  Still, he has to undergo dialysis treatment for the rest of his life.  He will live with it because he has learned from Hacken Lee’s song “Red Sun”: There will be tomorrow if you do not give up hope.

I usually listen to the radio before I go to sleep.  Tonight, I hear Hacken Lee’s popular song “Red Sun” again.
This song has always encouraged me whenever I am helpless and hopeless. It reminds me of the bittersweet memories.
In mid 1999, I came to settle in Hong Kong with a one-way permit.  I was glad that I could have family reunion.  It’s true that everything is difficult in the beginning. I found the busy lifestyle very stressful.  When I began to settle down, I thought I would spend the rest of my life calmly. Yet sickness had disrupted my plan.
Two years later, my health deteriorated. I often had fever, unexplained aches, headaches, weak legs, fatigue, loss of appetite and short of breath. I vomited when I ate. I thought it was due to work pressure and bad living habits. So I just took medicines bought from drug stores or drank some herbal teas. I did not know that disease has sneaked near me.  Finally, I collapsed and was rushed to the emergency room. I was diagnosed with terminal renal failure and had to undergo peritoneal dialysis treatment. At that time, I recognized the seriousness of my disease. I was very distressful and complained why it was me who had to suffer. I was just 21 years old.  I should be very energetic.  Instead, I was tortured by dialysis treatment. 
I could imagine I might suffer from more misfortunes. I could not face it. I went back to mainland China to seek help from Chinese practitioners and took herbal medicines, hoping that there would be miracles. Yet, my condition deteriorated and my life was critical. I was helpless, so I went back to Hong Kong for treatment. I remember there were a group of doctors and nurses trying to save me that day. They inserted a tube in my neck to clean my blood, so as to reduce the toxins in my body. Then I underwent surgery to place a soft tube in my abdomen for dialysis treatment.  I also learned how to operate it from the nurse. Later, since proteins in my body blocked the tube and the fluid could not come out, I had to undergo another surgery. I was exhausted by then.  I was hopeless and even had thoughts of suicide. I thought I was a burden on family. Fortunately, my family loved me very much and cared for me. They were very supportive and brought Hacken’s song “Red Sun” to encourage me. They touched me. I gave up the thoughts of suicide. I realized that there were many people whose conditions were worse than me. Since then, I did not complain anymore.  I knew that I was luckier than many others as I was still alive.
Getting sick is painful.  Still, we have to live, whether we are happy or sad. Then why don’t we live happily?  I came to realize that I should strive to beat the disease positively. I shall overcome it. Our determination is the strongest power.  When we have hope, we will have a better tomorrow. Chairman Mao said, “The road is winding yet the future is bright”.  It is true.  Getting sick is just a process. If you persist in fighting against it, you will finally overcome it.  Don’t be defeated by minor setbacks.
(This is the translated copy from Chinese version)

Getting A New Heart
Mr. King-man YUEN

Ever since he was in Primary 6, he has had heart valve problems.  When he was 21 years old, he was rushed to the emergency room one day.  He got his heart valve replaced.  Then he underwent a heart surgery in 2003.  Still, he got heart failure.  Finally he had to undergo heart transplantation.  Although he has been suffering from heart disease all these years, he appreciates wholeheartedly all the people who have helped him.

Ever since primary 6, I knew I got a heart problem; but there was no way to find out why. Later after Mom brought me to the Accident and Emergency Department at Queen Elizabeth Hospital and the doctor asked me to stay for a thorough examination, I was diagnosed having problems with the heart valves. But the doctor advised then an operation was not necessary and it would be alright if he put me on medication. Since then, I went for consultation on a regular basis. After some time, the doctor told me that my condition was becoming better and I needed only to go for consultation every three months.
A few years passed and I turned 21. As usual, I went home for lunch. When I was passing Wong Tai Sin Police Station on my way back to work, I fainted. The duty police officer saw this and called an ambulance and had me rushed to the United Christian Hospital, and then transferred to Queen Elizabeth Hospital. After a few rounds of examinations, the doctor told Mom that my heart valve problems worsened and suggested an operation. The doctor made it clear that every operation involves risks and Mom agreed, and finally I underwent a heart valve transplant at Grantham Hospital.
After operation, as there was a metal piece in my heart, I heard “dick, dick, dick” from my heart every day when I woke up. I was not used to it for the first few months. It took me a whole year to adapt to it. I started to take blood coagulants to monitor the blood concentration. During that time, I had many blood tests and it was found my blood concentration was either too high or too low. After 4 years’ unstable conditions, the index of blood concentration began to stabilize.
During those 4 years, I was working in a printing company, but then it moved to the Mainland to carry on business. As I did not want to work in the Mainland, I looked for another job. I got a job as a security guard. In 2003, I felt ill so I went to the Accident And Emergency Department at Queen Elizabeth Hospital. In that year, I went in and out of the A&E Department many times and following the doctor’s suggestions, I underwent a bypass operation. After the operation, the report came out and the doctor told me that I had 2 choices: to install a pace-maker, which cost two hundred thousand dollars or to have a heart transplant. I opted for the latter. I was then transferred to Grantham Hospital, where I was given a series of examinations. The doctor told me that my heart was failing and a heart transplant would be arranged. In fact, a heart transplant is no easy task. I and the medical staff had to fix many things before and after the operation to ensure a smooth operation. When I was waiting for the heart transplant, I did not only stay at Grantham Hospital but also had to go through one test after another to make sure my body conditions were fit for heart transplant. Tests included blood tests, ultra-sonic tests and ECG. Then I was arranged to have an interview with Dr. Fung, a psychologist at Queen Mary Hospital. It was he who assessed my mental state to see if I was fit for the transplant. After that, I returned to Grantham Hospital to take other tests and hold meetings with other doctors. These were done in the hope of having my body in the best conditions for the operation.
Not having to wait too long, I received a call from the doctor at midnight one day, informing me that there was a heart available for transplanting and asking me if I was willing to take it. I agreed at once and asked my younger sister and her husband to come to support me. Prior to the operation, I needed to have my body cleaned. When I was waiting for the operation, the doctor on duty and nurses came to see me and encourage me. These included Dr. Chen, who was to operate on me, the anaesthetist, the doctor responsible for thoracotomy and a few nurses. At 6:30 that morning, the operation started.
The operation was very successful, but as I was still weak, I needed to stay in the quarantine ward. Even when my sister came to visit, she had to give me food via the nurses. I stayed at the hospital for more than a month. After being released, I went back for consultation and tissue examination to confirm that my body functioned normally. Should there be no signs of rejection after the operation, I could carry out some simple exercises and physiotherapy exercises under the physiotherapist’s supervision. As my body conditions turned steady, I did not need to go back to hospital for consultation so frequently, from monthly to annually. A major examination included some physical exercises and thorough body check. Here I am much grateful to the operating doctors, nurses, the medical staff, the heart donor and the donor’s relatives. Without them, I will not have a new heart.
(This is the translated copy from Chinese version)


Rainbow Comes After A Storm
Patient from Alliance for Renal Patients Mutual Help Association

He is reminded of the good old memories when he sees his neighbor who has suffered from a stroke.  She may never recover, but she never gives up.  She tries hard to learn to walk again and she is always encouraging for other people.  Her energy is like blossoming roses.  He remembers the days when he struggled with his renal disease and has had kidney transplant, his enthusiastic sick friends encouraged him to go through the hard times and supported him to carry on. 

Being a patient, I would like to say something from the bottom of my heart. But when I think deeper, I would ask, “What does a patient imply?”, "What is something from the bottom of the heart?”, "How do we count someone as ill?” and “How to reveal one’s feelings, hidden down deep and to say what needs to be told?” All these self-asking questions enable me to think of a 60-year-old lady, living in the same block as I am.
Recently when I was on my way to my early shift, I saw her husband pushing her sitting in a wheel-chair waiting for the rehabilitation bus at one end of the road to join the stroke-rehab class. She had a job before and was willing to help others after work. She was a good neighbour caring for people living in the neighbourhood. Now, sitting in a wheel-chair, what she does is raise her white and weak hand to express greetings!
I have known her for six or seven years. For 2 nights weekly after haemodialysis, she would sit at the entrance of the building serving as mutual-aid security guard. Every time she saw me, she enquired about my health and my family. A neighbour like her is really difficult to find. Now sitting in her wheel-chair, she told me what happened half a year ago when she was about to retire. Stroke suddenly seized her. I tried not to notice the urethral catheter protruding from her pants, but to listen to her attentively. I could feel her pain, which has stayed in me for a long time.
Don’t think that she must be sorrowful and have a distorted face. On the contrary, she is always expecting a better morning. Her first greeting is always a clear and energetic “Good morning!” She then seems not to have seen me for a long time and says she is sorry when she sees me sick (renal dialysis) and happy for me when I am better (after kidney transplant). Although each time what she says is similar, her true concern never fails to touch me. I always receive her blessings quietly.
Holding her weak hands, I try to feel what she trying to express. She tells me how she encourages her classmates in the rehab class. There is a man who seldom talks and now he talks because of her neverending encouragement. She talks about how hard she tries to walk. Full of confidence, she says she can be able to walk out in the street with the help of a stick. She is trying hard to work as a volunteer, hoping, after rehabilitation, to help people suffering from stroke. Finally she will not forget to ask about my father who is now living in the home for the elderly.
How hard she is striving to get rid of depression. She has first taught herself to jump out of the handicap of her slowly recovering body and face the reality, actively participating in rehabilitation therapy. Imagine how heavy and difficult the process is! Even though the improvement achieved is little, she keeps going and encourages the  suffering people around her. Isn’t this the real meaning of “self help and mutual help”? She has put the spirit in practice. This is no longer a slogan for promoting community work, but something everyone can do, simple and direct practice. What she has done and is doing interprets precisely what a wonderful life is.
In the eyes of the ordinary people, she may not be able to recover fully and may need to be taken care of for the rest of her life. I think differently. I see in her a rose waiting to blossom, declaring to the world that how beautiful the energy generated by the compassion for life can be! Being remarked as a patient, she does not carry any trace of a patient. What she holds is a compassionate soul which is lacked by so many normal people. Having been sick for so many years, I sometimes stay inside the bitterness, presuming that it is a haven, not knowing that I have fallen into the incurable self-pity.
Until that year I came across a Christian, she let me know Heaven pity life and the real meaning of being alive. I regretted not having followed Jesus. Since then, I have known what existence means and no longer said a bitter word. Now, after more than 10 years, I can feel the abundance of life and the expansive hope lying ahead for me received. Heaven has not promised a sky always blue, or a rainbow after a storm. He seems to tell us we have to learn to love our unpredictable fate. Those 10 years and renal dialysis have made me learn it the hard way: to embrace the sickness and to go with it!
Every time when the tempting voice comes and urges me to give up, there are bound to be some people who encourage me. Their health conditions are worse than mine! I always try to put myself in their shoes, assuming that if I were them, I am afraid I could not take it and would end up committing suicide. Nevertheless, they are much wiser in treasuring life. They are live witnesses to life until they breathe their last breath.
I have to admit I am weak but my friends keep cheering me up. Some of them have passed away but their telephone numbers remain in my old telephone book with a black cover. Pages and pages of telephone numbers are kept in it. When I try to locate some telephone numbers, I cannot bear parting with those numbers the owners of which have died. A glance at them reminds me of the days we were together. Helplessly, I have been watching them, quietly tortured by pain, but their suffering look seemed to declare that they won. All these good memories stay inside me. Even though diseases did not let go my friends, the victory of the latter turned a catalyst for us to live on. One day when we meet in the Heaven, I will tell them, “Because you have worked hard to overcome life’s obstacles, to live every day and to bring me expansive encouragement, even the disease has tried to ruin me, I have never given, just like you!”
(This is the translated copy from Chinese version)


A Few Thoughts
Ms Shuk-yin PANG

Her gentle younger sister suddenly went crazy and was diagnosed with schizophrenia.   She had to take care of her sister and cope with people’s discrimination.  She was stressful and found no ways to channel her feelings.  Fortunately, she has learned how to double her happiness and reduce her worry.  Now she is more than happy to share her experience with others.

One night, the door bell rang. My younger sister came in. She stared at me strangely and talked to herself in a disorganized way. I was totally shocked. My gentle sister was not like that before. I tried to calm her down and asked what’s wrong with her, but it was helpless. I could not imagine my sister would suddenly go crazy. She was diagnosed with schizophrenia and was hospitalized at Castle Peak Hospital. It happened 30 years ago. Yet I still remember the scene clearly.
Psychiatric patients suffer much more than patients with physical illnesses. Both the patients and their families have to cope with the pressure, fear, anxiety, and even discrimination. If you have a family member who is mentally ill, how do you feel?   Will you discuss with your relatives and friends to help them? Or will you keep it to yourself? I had to take care of my sister but I lacked the knowledge about mental illness. I was very stressful. With whom could I share my feelings? A survey has indicated that among the family members of the psychiatric patients interviewed, 70% of them suffer from emotional problems, whereas over 30% have reached serious degree. How can we positively accept the fact that our family member is mentally ill?  I have found the answer. That is, to seek support from others and share your feelings with them. Moreover, the rest of the family should join together and seek ways to help the victim.
In 2002, I took a mental health education course of the HK Familylink Mental Health Advocacy Association. I learned various ways to alleviate pressure and skills in taking care of the patients. And I applied them to myself and my sister. I also encouraged my sister to take the course. Today, our relationship is ever closer. We always try to solve problems together. After many years of treatment, my sister’s condition has become stable. She is much more optimistic. She now works part-time in a convenient store at a hospital. She also actively participates in voluntary work at her spare time. I am glad that she is 80% recovered. People say that if you share your happiness with others, you will be twice as happy. If you share your worry with others, your worry will reduce to half. This is really true. Now my sister and I are willing to share our experiences with others. It always offers inspiration and motivation to people. I hope you can cope with your life positively. The future is bright. Let us support each other and move forward hand in hand.

(This is the translated copy from Chinese version)

Father and Daughter Taste Bittersweet Life
Patient from Alliance for Renal Patients Mutual Help Association

Both father and daughter had renal disease and had to undergo kidney transplantation.  When they tried to borrow money from relatives and friends, they were disdained rather than supported.  Instead, they got help from strangers.  Ah Chi’s story tells the feelings of the patients and reveals that life is bittersweet.

Life is bittersweet. You will know how bitter it is when you are despised and how sweet it is when you got help timely. A friend with renal disease tells her story.
Father and daughter like good friends Ah Chi used to enjoy close relationship with his father. They cared about each other. There’s no secret between them and they could talk endlessly about anything in a meal’s time.
Father became pessimistic and irrational
After diagnosed with renal disease, Ah Chi’s father lost weight gradually. He changed a lot after undergoing dialysis treatment. He used to be a man of strong build. It seemed he could take all the burdens on his shoulders. But then the skin of his face turned yellowish and he got drastic weight loss. Some people even thought that he was a drug addict and dared not to go near him. She was very upset. Her father was like a ball with no air. And he became irrational like a child. Sometimes he said he did not eat anything while he was actually using chopsticks to get food. Ah Chi often argued with him over trivial things.
Disdain from relatives
Before they went to mainland China to get kidney transplantation, they tried to borrow money from their relatives. By then they learned from their disdain and cold shoulder. She remembers her father’s sister said, "You are not the only one who has renal disease, why should I lend you money?” The indifference of her uncle and aunt also hurt her: “What is the selling price of your apartment? Why don’t you sell them to us without making a gain?” Their attitudes changed drastically after Ah Chi and her father got ill. When she asked her grandma to see her father because he was critical, her grandma refused with an excuse that she had to go to the law firm to sign some papers. She was very disappointed. She sighed that even they did not want to lend money to them; they did not have to say or do such things to upset them.
Thankful to those who offered timely help
You may think that your relatives or close friends will help you in your hard times.  Yet often it is strangers or just acquaintances who lend you a helping hand. 
Ah Chi wants to thank doctor Kwan Chi Hon of Tuen Mun Hospital especially. He gave her enormous support. Moreover, the primary school at where she teaches, the teachers in the secondary school and college she attended were also very supportive.  She was most touched by a primary 4 student. Actually, he was a problem student in the eyes of the teachers. But he was good at drawing. Ah Chi asked him to draw a picture to her every day before she underwent kidney transplantation. When she was back to work after surgery, she saw a pile of drawings on her desk. She was so touched that she shed tears. He did keep his promise. To save papers, he drew on both sides of the paper and divided the paper into columns. 
To carry on bravely
Ah Chi now takes courses and learns Chinese painting. Her life is busy. From her satisfied smile, we know that she is enjoying her life. She said she was stubborn in the past. She often got upset when she failed to meet her demands. But now she knows if she has tried her best, the outcome is not important. And she will never give up. She wants to help the fellow patients through sharing her experience and teach them Chinese painting. She said the life of renal patients is boring. They have to go home to undergo dialysis treatment at specific time. And they have to keep their home very clean to prevent them from being infected by diseases.
Ah Chi is more than happy to share with renal patients and encourage them to support each other.
(This is the translated copy from Chinese version)


Sickness, my old acquaintance!
Mr. Tangent Cheung, Vice Chairman, Hong Kong Liver Transplant Patients' Association

He was diagnosed with cirrhosis when he had his spleen removed.  His condition was complicated by renal failure.  He has 4 siblings and enjoys good sibling relations.  His elder sister donated her liver to him while his younger sister donated her kidney.  Three of them survived a life-threatening surgery individually.  His old dad, his wife and his son also motivated him to go on living.  Now he is always thankful and ready to help others.

I was diagnosed cirrhosis when I got my spleen removed in early 1990. At that time, the skill in liver transplantation was not yet matured, so my doctor did not recommend me to take the surgery. My condition continued to deteriorate. One night in April, 2001, while I was playing with my son at home, I felt a sudden abdominal pain and rushed to the bathroom and spit out a splash of fresh blood. My wife was terrified. She asked me if I had drunk too much red wine or eaten food like strawberries. I myself also could not believe it!  I was very shocked. I did not know what to do. We were panic that we even forgot to call an ambulance. We just jumped into a taxi and rushed to the Emergency Room of Queen Mary Hospital. In the taxi, I was very tired and only wanted to sleep.  "Don’t fall asleep! I beg you!" Both my wife and my 4-year-old son screamed. I tried hard to keep my eyes open. Maybe….If they had not begged me like that, I probably would have died.  Even heroes fear of sickness. I was no hero. Of course I was scared to death. Sometimes when I look back, I still dissolve in tears.
During more than 6 months’ hospitalization, I had been rushed to the ICU many times for endoscopic surgeries to stop internal bleeding. I remember that there were two times when my esophagus bled nonstop, they had to put a ball-shaped object into it to stop the bleeding. The process took 24 hours. It was very painful. I shook at the mouth so hard that even one of my teeth was shaken off.  Around May, my kidney deteriorated fast. I had to undergo dialysis. I was in coma twice when my life was critical. I suffered from swollen abdomen, fatigue, vomiting and loss of appetite. Naturally, I lost weight. The doctors removed the fluid accumulated in my abdomen, and gave me medications and injections to ease my pain and itching. Though I suffered a lot physically and spiritually, I believed that the doctors would cure me and I completed the series of treatment.
I knew very well that the chance for me to find donors and have both liver and kidney transplanted was slim, but I did not wait pessimistically. I tried hard to look for treatments.  And it was at this time that I recognized that my knowledge about health was very limited.  Since it was a rare case that both liver and kidney failures happen at the same time, it was particularly difficult for me to get relevant information. Though it was not easy, I kept walking in the hospital corridor every day. I just hoped to prevent my swollen feet and abdomen from deteriorating further due to lying on bed most of the time.
I had to undergo dialysis twice a week. The process was very painful. I had spit blood and rectal bleeding due to varicose veins. The doctors gave me injections to stop bleeding.  Besides, I had lightheadedness due to high toxin levels in urine. But I kept on chatting with the other patients every day. By doing so, I hoped I could keep my mind clear. I did not want to sleep all the day. The fellow patients always said that my determination to live had overcome my illness.
I appeared to be strong. In fact, I was terrified. Who is not afraid of death? But the will to live support me. My wife, my son, my father, my relatives and friends, all the doctors and the medical team were very supportive. Their encouragements gave me emotional support. The pains of nausea, vomiting, loss of appetite, difficulty in concentration could not defeat me.  They gave me strength to fight against the illness positively. I almost died once when I spit a lot of blood. My family and my friends all came to see me. The doctors and nurses helped me with all their efforts. When I look back today, I recognize that positive thinking can really save me.
Support of the family and friends
My wife was the first one who wanted to donate her liver to me. She could not wait for the hospital’s arrangement and went straight to a laboratory for a blood test. Unfortunately, she could not be a donor because her blood type was different from mine. She could only pray at my bedside everyday. She was just an innocent woman.  However, she had to manage my company by herself and at the same time took care of me and the family. Today when she looks back, she feels that those several months were just like several years. I will remember her love forever.
My father at that time was already 75 years old.  He lived on the east side of Kowloon. It took him more than an hour to go to Queen Mary Hospital. But he knew that I did not like the low-salt and low-oil hospital meals. So he made lunch and dinner and brought them to me everyday. You can imagine how exhausted he was. Without him, I had to take the tasteless hospital meals and struggle with the painful treatment. It would be much more difficult for me.
My son was also a drive for me to live. He was only 4 years old at that time. One day, my wife told me that he did not want to leave the hospital after visiting me, because he wanted to see me again.  He also asked if I would be sick forever and would never go home. I went to the hospital lobby and saw them waited there lonelily. When my son saw me, he ran to me immediately.  My wife pretended to be happy and said, "See, your dad surely will go home!" He held me and cried loudly. I held him tightly and said, "Dad will go home and play with you!" I also shed tears.
I have 5 brothers and sisters. Our relationship has always been very close. My elder brother could not donate his liver because he had Hepatitis B virus. My younger sister had fatty liver. My elder sister had a heavy family burden. She was afraid that the surgery would fail.  But they were all eager to save me. My younger sister tried hard to reduce fat and already decided to donate her kidney to me. My elder sister also decided to donate her liver to me at last. All surgeries are risky. Three of us had to undergo a life-threatening surgery individually.  If the surgeries failed, only two of us would be left. I am grateful to my siblings. Without their selfless sacrifice, I would not have the chance to write my experience here.
The surgery lasted for over 20 hours, my friends prayed for me all through the process. I will always remember their kindness and seek to repay them.
Feelings after recovery
I was a workaholic before I got sick. I put work in the first place. This sickness experience let me know that life is really very fragile. We do not know what will happen tomorrow.
Could there be an Octopus Card for life?
Could we just put the Octopus card on the machine to see how much time left for us?  In this case, we can control how we use our time. This illness experience tells me that there is no Octopus card for life. No one knows what will happen in the next second. No one can manipulate the length of life.
My life attitude and lifestyle have changed after I recovered from my illness. I set new goals.  I am still passionate in work, but my biggest clients now are my family and those who need me to take care of. The job I do most is voluntary work. In the process, I always find touching family love and friendship. I believe that I am regenerated and I should always be ready to help others. I find my life more meaningful and satisfied.
In the past, I was like them. Now, I hope they are like me.
In fact, many chronic patients like me have to face the fact that they have to go back to the society and the workforce after treatment. This is not easy. We not only need help from the government and the society, we also need to know how to overcome the difficulties brought by physical handicaps and to go back to the work force with self-respect.
My motto is "I am regenerated and I should always be ready to help others". I will try my best to help the recovered patients to adapt to new lives, learn new skills, seek new jobs, regain self-confidence and get along well in the society.
(This is the translated copy of Chinese version)


You Can Do a Lot with Impaired Vision
Mr.TSANG Kin-ping , Chairman, Alliance for Patients' Mutual Help Organizations

Tsang Kin Ping, the chairman of Alliance for Patients' Mutual Help Organizations, has been suffering from deterioration of vision since he was young.  He has always tried his best to overcome the hindrances and care for the society.   He formed the Retina Hong Kong with fellow patients to strive for the welfares of patients.  Getting sick is no big deal.  Patients with impaired vision can do as much as the others can.  They do not see much, yet they can do a lot.

I have Retinitis Pigmentosa (RP), an eye disease in which vision deteriorates over time.  Currently there is no effective treatment for this condition.  It is a genetic disorder, of which causes are not yet identified.  I was diagnosed with RP when I was 12 years of age.  I am 56 years old now and my vision has degenerated to near blindness.

When I was small, I lived a normal life, except that my night vision was not very good.  I made it through school and I worked in a large company after graduation.  When I was in my thirties, my vision started to degenerate gradually.  I used to deal with external affairs, by then I had to handle internal matters of the company.  I was depressed and helpless.  Luckily, I had a great family and a great wife.  They had been very supportive and taken good care of me.  My company was also supportive.  They provided visual-audio equipments and suitable softwares for me to work conveniently.

During that time, I started to contact organizations of visual disabled persons and got acquainted with a group of patients with RP.  This was important for me because I have learned a lot from them.  They made me understand that we could still lead an independent life even we were visual disabled or blind.  Some of them had worse vision than me, but they were optimistic and helpful.  So, why should I be upset?  Of course, not everyone can face illness optimistically.  Some patients see impaired vision as a hindrance that prevents them from doing a lot of things.  They dare not even go out.  To them, I would say that whether you could do something depends on your determination, not your vision.

When my vision began to degenerate, I dared not use automatic banking machine.  I was afraid that I could not handle it and I might hinder other people from using it.  In fact, I found out that it was not difficult to handle.  I just had to push a few buttons.  You just have to try it.  Visual disabled persons actually can do a lot of things.  Of course, we hope our society can provide more facilities for disabled persons.  Nowadays, Hong Kong is still not a user-friendly society for visual disabled and wheel chaired people.

To overcome psychological hindrance, to get rid of fear and sense of inferiority, we have to face the reality first of all.  Try to live around the disease.  You have to tell yourself that you are visual disabled, but it is not a big deal.  We can still live a fruitful life with visual disability.  It is just like you have 9 dollars while others have 10.   Why should you be upset for just a dollar short and forget that you have 9 dollars?  With the advances in technology, we are able to get in touch with the world through internet and talking softwares.  We are much luckier than patients with RP in the past.

Today, there are around 3,000 patients with RP in Hong Kong.  I understand that mutual support is very important for the patients.  In 1995, I founded the Retina Hong Kong with a dozen fellow patients.  It is a platform for patients with RP to communicate with and help each other.  It is the first and the only organization of the kind among Chinese communities around the world.  We have members in mainland China, Taiwan and Southeast Asia.  Our website provides comprehensive information on RP in Chinese. 

I retired in 1998 due to degenerative vision.  Since then, I have been a fulltime volunteer.  But I always encourage fellow patients who still have working ability to stay in the work force.  In August, 2009, I became the chairman of the Alliance for Patients’ Mutual Help Organizations and got a chance to contribute my efforts to public health.   I hope the various patients’ societies could upgrade themselves and care about the development of public health on the whole.

I always try my best to help depressed patients.  I want to encourage them to plunge into an active life and come out to meet other patients.  Everybody may get sick.  Just learn new ways to get around and live.  There are many organizations which are willing to lend a helping hand.  While we need other people’s help, we can also help others.  Be positive and optimistic.  You can do as much as the others can.  I participated in the Trailwalker in 2002 and completed the trail within 40 hours.

Getting sick is no big deal.  We can do as much as healthy people can.  Even though our vision is impaired, we can still do a lot.

Tips for sick friends:
- Everyone would inevitably get sick.  When you get sick, don’t let it affect your life and family.
- In face of sickness, don’t complain or blame yourself and don’t be afraid.  Be positive and optimistic.
- Share with other patients your self-managing experience.
- There are many assistive equipments to help the patients.
- Be a smart and responsible patient.  Every time before you see the doctor, prepare some questions to ask him/her.  This can help you to communicate better with your doctor and understand your condition more. 


Don't be a Sick Person in your Life
Mr. Kwok-wah SIU, Disc Jockey of Radio Television Hong Kong

Suffering from tongue cancer, popular radio show host Siu Kwok Wah coped with the disease positively and tried every means to seek treatments. He also knew that it was important to combat the disease together with his family. He did not label himself as a sick person. He believed that it would help him feel better and get better.

I first got cancer in 1989, when I felt painful as my tongue touched my teeth. I did not bother about it because I thought it was only caused by minor mouth sores. I just went to a general practice doctor for treatment. Later, I found a tumor on the right side of my tongue. It was ulcerous and bled. Besides, those mouth sores did not heal. So I seek advice from other doctors. One of them was a friend of mine. He suspected that I got cancer. So I went to a dentist. The result of tissue examination confirmed I had tongue cancer. Since then, I underwent surgery and radiotherapy at the Prince of Wales Hospital for about six months. The disease was finally under control.
I had mixed feelings about my illness. On one hand, I was sad because I knew very little about cancer. I thought cancer was a terminal disease and I was afraid that I would die young. On the other hand, I was happy to know that western medicine was modern and sophisticated. With apt treatment and in the care of the medical team, I was confident that I would get well. Gradually, my condition became stable.
However, I lost taste sensation after radiotherapy. Fortunately, my family took good care of me so that I could overcome the disease and went back to work.
Early this year, when I brushed my teeth one day, I carelessly hurt the old wound. There was a small sore on the back of my tongue. It did not heal for quite a while. At that time, I worked in the radio station during the day and was busy writing two books at night. I suspected that my tongue cancer recurred. So I did a tissue examination again at the hospital. The result was negative. But the sore still did not heal. To be safe, I took the advice of Professor William Wei of the Department of Surgery of the University of Hong Kong and underwent a surgery at Queen Mary Hospital to get a larger tissue for examination. Much to my relief, the result was still negative.
This “suspected cancer recurrence” experience let me understand the importance of my family. When I first got cancer, I fought against the disease by myself with my willpower. I did not even tell my mother before the surgery. But this time, I took the advice of my friend who was a psychiatrist. He suggested me to talk with my wife before the surgery. I told my wife the conditions of my illness and discussed with her about the arrangements if my cancer recurred. After this in-depth discussion, I was enormously relieved. It also let me understand that whenever you got sick, you have to discuss with your family to find out the best solution together.
I find that many cancer patients often feel depressed and helpless. I wonder if you know that this kind of negative emotions will affect your health. I think that even if you got sick, you should refuse to live a sick life. Don’t label yourself as a sick person. Live healthily even though you got ill. In face of illness, don’t be afraid to talk about it and try all means to cure it. I just hope all sick friends will face their illness bravely. Don’t see yourself as a sick person. This will help to generate positive emotions and will definitely be contributive to curing your disease.
(This is the translated copy from Chinese version)




Face Your Disease Bravely
Dr.Wing-man KO, Chairman of The Hong Kong Anti-Cancer Society

We should make efforts to take care of our health. But the occurrence of illness is sometimes beyond our control. Dr. Ko Wing Man, Chairman of The Hong Kong Anti-Cancer Society, once had a pituitary tumor and since then has to take medications. Being a chronic patient himself, Dr. Ko knows that we should not take health for granted. But when we get sick, we should face the disease bravely and lead a fulfilling life.

I always tell my friends with chronic illness that we should not take our health for granted.
Instead, we should make efforts to take care of our health. A balanced diet and regular exercises help to maintain our wellbeing. However, it does not guarantee that we can be immune to disease. The causes of disease are complicated. Lifestyle, objective circumstances and hereditary factors all contribute to the causation of disease.
There are many models of healthy living and well being. Smart patients accept illness as a part of living and adopt a positive attitude towards it. After all, one has to accept the imperfectness of our own body and make lifestyle changes to live well with the disease.
I have a pair of  "sensitive" eyes with inadequate tear secretion. Because of this, the cornea easily got irritated with abrasion, and my eyes would then tear. Sometimes, it even affected my work. When this happened, I had to wear contact lenses, which functioned as a bandage to lessen the irritation.
About two years ago, I joined the "Long March" for Education in Shangri-la, Yunnan, where I hiked through the Ancient Tea Horse Road. The night before we left, I got severe headache. Luckily, with the help of Mr. Anthony Wu Ting Yuk (Chairman of the Hospital Authority) and Dr. Yiu Ming Kwong (Consultant, Surgery Department of Princess Margaret Hospital, I returned to Hong Kong for urgent treatment. MRI (Magnetic Resonance Imaging) examination showed that I had a pituitary tumor which should be removed immediately.  Fortunately, the tumor was benign. 
The surgery was a turning point in my life. Since then, I have to take some medications to maintain my hormones in balance. Now, I am a chronic patient and I must learn how better to look after my health.
Despite what we have done in maintaining healthy lifestyle, the occurrence of illness is sometimes beyond our control. When we get ill, it would not be helpful to blame on ourselves or to adopt an attitude of denial. These negative emotions do not help. We should adopt a positive attitude and learn from other fellow patients as to how best to cooperate with health care worker: to manage the illness and to cope with the disability..
Nowadays, patients can get health information through various channels. With the help of the medical team, we can choose the most suitable therapies and acquire appropriate self-management methods.
Finally, I would like to share the following with all friends:
1. We should make efforts to lead a healthy life to maintain our wellbeing, but should not take health for granted.
2. When we get sick, don’t blame ourselves. Seek help from medical workers and share with friends and fellow patients. Adopt a positive attitude and live a fulfilling life despite of the disease.
3. Actively seek health information through proper channel and collaborate with the health care professionals.
Adopt healthy lifestyle.  Do not take health for granted.  When you get sick, face the disease bravely and lead a fulfilling life.”



Do More Good Things
Mrs Eliza LEUNG, Honorary Associate Director for Sau Po Centre on Ageing

Mrs Eliza Leung, former Deputy Director of Social Welfare, retired from the government because of rheumatic heart disease, and finally had to undergo heart valve replacement surgery.  Since then she has to manage her lifestyle much more carefully.  Yet she does not complain.  Instead, she faces it positively and continues to do things that are meaningful to her.  Just like the Buddhist saying: to plough the heart, prepare it for receiving the shower of grace.  She lives in that way and therefore she is happy.

 We may not have control over the events in our life. Getting sick is one of those events.  However, if you can accept your illness, face it positively and do good things through the journey, you can live happily still.

During a physical examination in early 1990, I had my heart murmurs detected.  After further examination, I was diagnosed as having rheumatic heart disease. The cause was unknown.  However, I used to find myself getting short of breath, which might be due to the disease.  Since then, I have been taking up medications.

In 2002, when I was the Assistant Director of the Social Welfare Department, I was very busy. But I loved to work. Apart from taking up the full time job, I was also voluntary advisor for various organizations. However, I started to feel weak and would catch influenza easily. Taking the advice of my doctor, I underwent the mitral valve surgery, hoping that I could be cured and become as energetic as before. Nevertheless, I still felt discomfort in the chest after the surgery. The doctor commented that I might have worked too long regularly.  My husband and my son also urged me not to work so hard. Reluctantly I realized that I could no longer lead such a busy life. Although missing it very much, I eventually chose to take an early retirement in 2003.

After retirement, I still participated in various voluntary undertakings. In the following years, I helped organizing training courses in mainland China for the Hong Kong University. Every year, I had to visit 3 to 4 provinces in China. While in Hong Kong, I also took up voluntary assignments with the various universities and colleges, Department of Health, The Elderly Commission and the Hong Kong Council of Social Service.  Life after retirement was still busy.

By the end of 2007, I felt that my health was deteriorating rapidly. I lived by a cycle of 7-11, that was, I got up late at 11 am and already felt very exhausted by 7 pm.  In that way, I could no longer attend any social activities. When the weather changed, I easily caught influenza. Having sought advice from three doctors, they all recommended me to undergo the heart valve replacement surgery.

I decided to receive the treatment at Grantham Hospital.  It was a big surgery. I was anaesthetized up to 10 hours. My aortic heart valve was replaced and tricuspid valve repaired. During the surgery, my doctor discovered that my heart had a  "hole" as well and he repaired it too. I was informed later that I could not be anaesthetized for too long a time.  The already damaged mitral valve had not been replaced then. The doctor advised that I might have to replace it someday still.

Since then, I have to take in warfarin ("blood thinners") regularly. As Vitamin K in our diet can affect the function of the warfarin, I have to monitor my diet carefully. I even have to give up my favorite green tea ice cream. I used to work very hard, regardless of risks. After the surgery, I have come to appreciate that we all have our own limits. We should not exhaust ourselves but to act according to our capacity. When we know that we cannot handle something as good as before, we have to get a limit to it. But I continue to do things that are meaningful to me. I believe that we should repay the society which brings us up. I give all the credits to the society for my achievements, and I think I should contribute to the society when still having the ability to do so.

Through the personal experiences as a chronic patient, I have learned that health is most important. However, I do not want to complain.  Instead, I learn to face it positively.  Actually, I find myself very lucky. Though I got sick, the disease is curable. Besides, my family and the medical team have taken very good care of me. I am always grateful for that.

"Man proposes, God disposes". I would like to use this proverb to encourage our fellow patients. I would say that we can always try our best but leave the outcome to God. Try your best to manage the illness and do good things to cultivate your fortune. Just like the Buddhist saying:  "To plough the heart, prepare it for receiving the shower of grace." Then you will become much happier. If our fellow patients would learn from my experiences and face their illness positively, this is a good thing.

Leave it to God.  He will plan for us.  

Don't Let Sickness Overwhelm You
Mrs. Rita FAN, Hong Kong Deputy to the National People's Congress

Sickness is a part of life. When we are sick, try to live life as usual. Continue to enjoy life. Rita Fan, Hong Kong's deputy to the National People’s Congress of the Republic of China, once had to cope with breast cancer and the torture of having family members who were ill. Yet she did not complain or feel self-pity. Instead, she was optimistic and positive. She transformed all the distresses into positive energy.

I was a patient once. I also had family members who suffered from illness. Each of us copes with such situations in our own way.  Allow me to share with you my experience.
In 2001, I was diagnosed with breast cancer. There were no symptoms at all, so was not psychologically prepared for this. Nonetheless, I underwent a mastectomy followed by 25 times of radiotherapy treatments. The affected area was numb for a number of years. It was not a pleasant experience, but I kept my head up and remained optimistic throughout that period. Complaining or feeling sorry for myself can only make things worse. It would affect my emotions and quality of life. As the Chinese proverb says, “Fate determines the time of birth and death, riches and honors are the will of heaven”. I decide to take things in my stride. After all, it is the Doctor’s job to cure me so let him worry about me.
The road to recovery from cancer and traumas are long drawn out. Pain, discomfort and inconvenience are integral part of the process. I had to learn to be patient. I kept reminding myself about another Chinese saying, “Illness arrives like a landslide, but goes like pulling thread from a cocoon.”  We have to be optimistic, follow the doctor’s advice, and be thankful that we are still alive to enjoy life. Try to exercise regularly, and if required take physiotherapy treatment. Sadness, anxiety, and impatience hardly do any good to our health. Sometimes I think that certain people die not of disease. They die of fear. They worry all the time, and as a result cannot sleep, become irritable and loss appetite. Their health deteriorates, and their illness worsens. Fear has takes their lives prematurely.
I trusted my doctor. I also believed that I could benefit from other patients’ experiences. For example, I took other patients’ advice and drank boiled carrot juice after radiotherapy. It helped alleviate side-effects. I also started walking for exercise. I moved my arms as I walked. After exercising a year, I found it had soothed the pain of my arm muscles and my lymph fluid circulation did not get worse. In our community, there are many patients’ mutual help organizations. It is helpful to participate in these organizations, as we can share useful information, learn self-help and even help others.   At the advice of a friend suffering from the same illness, I searched the internet for the side effect of the various medications for breast cancer and listed them out. Even my doctor asked me for a copy of it!
Somehow, I firmly believed that I would not die of the disease. So I carry on business as usual after I got sick. Actually, my daughter’s illness had greater impact on me. She got renal disease in 1994. It was the first time that I realize that I might lose her. Life was so unpredictable. Treasure the loved ones around you. When family members get sick, we have to care for them with our heart. When the whole family stands united and supports each other, the pressure becomes more bearable. If we love our family members, we must try to cheer them up, and we must remain positive as well, try not to feel bad and distress them with our sorrow and negative feelings. 
Sickness is an integral part of life. When we are ill, we have to be treated, and we try to lead a normal life as far as possible. Don’t let the disease affect your life quality.  Continue to enjoy your life and don’t let sickness stop you from pursuing your goals.   


Take things as they come
Wong Chor Ling, a patient carer

Having a daughter infected with lupus, the mother by all means worries and feels painful. What she can do is to take care of her comprehensively, and try to make out time to accompany her to join patient groups. Unexpectedly, the mother has been found infected with the disease too. She does not blame anyone. One the contrary, she deems it lucky as she has the experience of dealing with the disease, so she can face her conditions calmly. Take things as they come. As you can still have the effort to help others, why bother the self-pity?

Many people inherit diseases from their parents, but lupus is something peculiar; sometimes it’s the daughter who has the onset of the disease, and then it’s mother’s turn to have the onset. The situation of mine and my daughter is like this.
My daughter did not feel well at about the end of 2005, feeling pains at the joints, and the eyes became red; at that time, the family doctor said she was infected with virus. However, her conditions did not get any better after medications. When it was New Year of 2006, she planned to go on a trip to Thailand; but as her conditions worsened, with pains in the whole body and a fever, she was forced to cancel the trip, and finally as advised by the family doctor, she went to hospital for examination. The result was that she had got lupus.
The diagnosis was quite beyond my expectation because my daughter had been healthy since childhood, and could have never thought of having the disease. I knew nothing about lupus, but I did have taken care of a church friend who died of the disease after over-exposing herself to the sun, therefore I worried my daughter would die too. At that time, the doctor-in-chief explained to me the details about the disease, and comforted me, saying that because of modern medicines and medical technology, lupus will not be fatal so easily, which eased my worries a bit. After hospitalization for 2 weeks, my daugter was discharged, but very soon, her whole body got swollen, and there were acnes all over her skin. I hurriedly sent her to hospital, and even the doctor was shocked. Fortunately, she was confirmed to be allergic to drugs only. Her conditions turned normal when she stopped taking the drugs.
My daughter was still pursuing her studies in college. To regain health, she applied for temporary suspension from the college, and did her self-study, and rested at home.  At that time, I was still working, but being busy was not an excuse for not doing something extra, so I would see to it that my daughter would have soup which would benefit her health daily, as I felt a dietary therapy and rest were important to a patient.  Besides, I accompanied her to join the activities and seminars held by the Hong Kong Lupus Association, an association for the mutual help among patients, hoping that we could obtain more information about this disease.
My daughter’s conditions were getting stable gradually, and with the help of the Hong Kong Society for Rehabilitation, she got a job. At the beginning of this year, I felt my eyes were very dry, and there were pains in the bones, so when my daughter went for follow-up checks, I made use of the chance to mention these symptoms to the doctor. He urged me to stay in the hospital for examinations and it was then found that I was infected with lupus. The doctor said they had come across cases like ours -- the onset of the daughter’s disease induced that of the mother’s. It might be because the mother had been struck by her daughter’s disease, which affected her emotions, plus insufficient rest, etc., the hidden disease-causing agents were then stimulated. My conditions were not serious, but for the sake of health, I decided to retire early to monitor my body properly. Besides, I have religious belief, so my soul had got support, and my pains have reduced much, only that my eyes are still dry, and I have to use eye-drops to smooth them.
Mother and daughter have got lupus simultaneously. Some people may swear, but I accept it calmly. When my daughter got the disease, I really worried much, seeing her suffer made me painful. Maybe it is because of my religious belief which enables me to believe that “What must be must be”. As it has happened, I have to accept it, and the whole family tries to figure out how to help her. The mutual care among family members is very important, and no matter how busy I am, I will try my best to take care of her in every aspect in her daily life, including emotional support.
I tend to feel a bit fortunate to have my daughter have the onset of the disease earlier.  At first, I might not be too acquainted with the disease, but I could look after her with full strength.  And when it was my turn to have the onset, all of the family have been familiar with the disease, and thus we can face it calmly. If the case occurred the other way round, my daughter would be caught totally unprepared.
Now we are very careful in observing our health, paying attention to rest, and we try not to put the disease on our lips, but I no longer treat my daughter as a patient, and we live normally. Suppose you are so unlucky that you are infected with this disease, take things as they come. There are many people that are more unfortunate, and you can still contribute, and can still help other people. Why bother to self-pity yourself, making yourself suffer?

You are the most important person to rely on
Patient from the Hong Kong Lupus Association

He is one of the few males who got systemic lupus erythematosus, which has caused him to go in and out of hospital for more than half a year continuously. Because of being allergic to drugs, he has had a close encounter with death. Lying in bed, he could feel not only the support from family and close friends, the regards from strangers also impressed him much. However, what he thinks most important is one’s own support. Otherwise, others won’t be of help.

Out of 9 females suffering from systemic lupus erythematosus, there is one male, and I am the one.
I changed to work in a new company in the middle of 2008. As the colleagues liked running, I joined them too, but not knowing why, every time after running, I found all my muscles sore, and the leg was the most painful. At that time, I thought it was only a kind of muscle fatigue, but as there were red patches on my face, and they didn’t fade away after a few days, I went to consult a dermatologist.
The dermatologist said it was skin allergy and prescribed some drugs for me. A few months passed but my skin conditions did not improve, and I began to feel very tired and painful in the bones. I even had stiffness in the morning, dry mouth, canker, and etc. Later, I went to consult another dermatologist. He concluded that my symptoms were similar to those of systemic lupus erythematosus, so he arranged for blood tests, antinuclear antibody (ANA) test and anti-ds DNA test. Finally, I was diagnosed having got systemic lupus erythematosus.
At the moment of the dermatologist’s announcing his diagnosis, I couldn’t believe it -- although when he suspected that I was infected with the disease at the beginning, I went online to search for related information and found that my symptoms really similar to those of lupus. Though shocked, I did not feel defeated because I know the disease can be cured. But then I always had fever, and after taking febrifuge, the fever improved a bit, but the temperature rose again soon after I stopped taking febrifuge.  I finally was admitted to hospital before Chinese New Year in 2009.
In hospital, I was given detailed examinations and treatments. After being hospitalized for about 2 weeks, I was discharged. Then I thought I could resume my work, but it didn’t take 2 weeks before I was admitted to hospital because I had fever again. The doctor found there were bacteria in my blood, so I was prescribed antibiotic, but the situation seemed out of control. I stayed in hospital for 3 weeks, and 4 days later, I was hospitalized again because of fever. This time, the fever turned out to be more serious, and what the doctor could do was give me antibiotic injections, in the hope of controlling my conditions. After fussing about for more than 10 days, it was found that I was allergic to penicillin. As a result, they used another antibiotic to treat me, and at the same time they increased the dosage of steroid.
I was very depressed at that time, fearing the doctor could not cure me, and felt scared that I would die. Maybe it was because of the side-effects of medications, my sense of taste turned strange. While eating juice candy, I tasted mint. I even had illusions which caused me to see ghosts at night. The doctor told me that it might be because I had been in hospital for too long, so I had developed painc attack. Luckily one month later, I was finally discharged. I lost nearly 20 pounds, and my face swelled because of medications, and my 4 limbs turned very thin.
While in hospital, my sister and a good friend come to see me almost every day. Though I tried to tell them not to come, I hoped they could come daily. Anyway, lying in bed all day, and worrying about my disease becoming incurable, support from my family and friends became vitally important.
Family members are important and so are the medical staff. I especially thank my doctor-in-chief , Dr Mok Mo Yin, Assistant Professor of internal medicine of Queen Mary Hospital, Dr Wong Woon Sing, Consultant, and the team of medical staff.  Besides taking care of me intensively, they have given me a lot of relevant information, enabling me to know more about the disease. Dr Mok also introduced me to join the Hong Kong Lupus Association, an association for lupus patients. As I was admitted to hospital again after joining the association, I could not attend the welcoming activities for new members. Its president took the trouble to visit me in the hospital. A person who had never met me before did care about me. I was very moved at that time.
In the Hong Kong Lupus Association, I have known people like myself, and among them there are some young male sufferers. I can see that some of their diseases are more serious than mine, and some even have got nephritis or need to be operated on, which makes me feel that I am lucky enough. Since then, the depression that came with the disease has begun to fade away, and I have become a bit optimistic.
Since the last discharge, I have not had the onset of the disease. Though still have to go for follow-up checks, I presume that I have recovered from it. When faced with diseases, I believe that the most important thing is to rely on your own. If you give up yourself, other people can’t be of help even if they want to help. Remember to stay optimistic, and tomorrow will be better.

This is a new day and I am a new person
Pang Bo Ping, Patient carer

At the time she knew her husband had got spinocerebellar atrophy, Pang Bo Ping said frankly that she really couldn’t accept the fact. However, her religion tutor taught her how to face and accept it, and to lay it down at the proper time. Although it is not easy, she gets to live on anyway. So she try her best to learn to be a completely new person every day. Yesterday has gone, and today is a new day.

My husband is a patient of spinocerebellar atrophy, but the DNA report pointed out that it is not hereditary or gene mutation, and he is the only one that suffered from it in his family.
Since January 2008, my husband was swaying when he was walking, and was always bumping into things.  Speech also became slurred.  He went to the Neurosurgery of Alice Ho Miu Ling Nethersole Hospital for examination.  Having been hospitalized for a few days, it was confirmed he had got spinocerebellar atrophy.  He was then discharged and he continued with his work, but then he needed a stick to support his walking, and he had fallen and been hurt, and even had difficulty in opening a book.  As his work was very busy, he needed to do things hurriedly.  He insisted on doing so for a year, but found it too hard. Finally he decided to retire early and was then 59 years old. 
We have never heard of spinocerebellar atrophy.  So when the doctor informed us that my husband got it, we did not have any idea what it was.  Coincidentally, there was a TV drama named “A Litre of Tears” on television, and later there was a programme produced by Radio Hong Kong in which two sufferers of spinocerebellar atrophy were interviewed.  When we saw that their symptoms were the same as those of my husband, we began to know what the disease was.
Frankly speaking, I couldn’t accept the fact for some time, and my mood was low enough.  Seeing my husband not following the physiotherapist’s instructions to practice, just sitting on the sofa, I would be angry.  However, as I gradually knew more about the disease, I began to understand that my husband was not lazy. It was only that he was not able to do so.  I no longer pushed him and let things go naturally.  I slowly have learnt how to take care of him, such as when he is unable to hold things steadily, I give him a cup with a handle, and it is unbreakable; when he uses a spoon to fetch food, he always spills food onto the table, and then I get him a deeper plate.  As he seldom goes out, I will let him read newspapers more, watch TV, hoping that he can still be in touch with society.  Furthermore, I will try to mention his disease as less as possible.  To keep talking about the disease won’t do any good to his mood.
During the infliction of the disease, we have got help from various people. It was all because of the introduction of the occupational therapist of the Alice Ho Miu Ling Nethersole Hospital, we joined the Hong Kong Spinocerebellar Atrophy Association  and knew many patient friends, and understood much more about the disease through seminars.  Recently, we were given a wheelchair and similar equipment by the family of a patient through the help of Ms Tsao Yee Man, the President of the Association, and the help of the Association.  In addition, when the outreach social worker came to teach my husband to do physiotherapy, he found the set of cabinets were placed inappropriately.  He contacted the district organization, and a team of volunteers then came to help move the set of cabinets to a suitable place.  I have to thank them here.
I used to have problems while communicating with my husband.  But since he got the disease, I have found out that he is a person who doesn’t know how to express himself, which makes me feel I am always the one who has done wrong.  This has caused our relationships to worsen.  In order to improve our ways of dealing with each other, I enrolled in some courses on communication to learn psychology and communication skills.  Now, I won’t argue with him and I can take care of him wholeheartedly.
Anyway, life is unpredictable, and we have to face reality, even if there are problems in living together.  We are a family.  What I can do is not to mind too much.  I am a Buddhist, and my mentor taught me when there was difficulty, I had to face it, accept it.  If I could not improve it after trying, I had to leave it alone. Sometimes, I cannot follow exactly what my mentor has taught, as human beings have their weak periods, but I will keep a normal heart, slowly adapting myself to it. 
When a person is inflicted with disease, he/she will naturally feel bad, especially my husband who has got the disease without knowing the reason.  To make the case worse, he used to be the one who provided for the family.  Watching his body deteriorating gradually, we feel miserable and helpless.  However, we need to live on, so we should face our life with a positive manner.  Waking up every day, I will tell myself that yesterday has gone.  Today is a new day and I am a new person.  So I wash a new face and have a fresh breakfast.  When the weather is fine, go out and breathe some fresh air.  Even if the weather is not good, why not just make a deep breath in front of the windows, giving a new feeling to yourself?  Maybe the portion of new feeling can’t be felt in a short time because it takes time to practice.  I will try to feel it every day, and because of this, I feel hopeful, which makes me excited.  It is like having bought a piece of new clothes, how pleasant the feeling is!  I hope every patient and their families will try to feel.
Furthermore, I would like to remind you here to treasure health, and be aware of any changes in your body.  Before retirement, my husband had been working in a tiny and badly ventilated environment.  Being very confident of his own strength, he always did labor on his own no matter how heavy the item he was moving, or how big the blanket he was washing.  He never acted according to his strength.  Whether habit of this kind has any relation to his disease cannot be traced, but one should care about one’s health.  If one’s body conditions turn bad, diseases have their chances.  When a rubber band is stretched excessively, it will break.  So no matter how strong your body looks, you still need to rest properly, and be aware of body changes.  Even if the problem is minor, you should consult the doctor, because many big problems evolve from small ones.

Living A Splendid Life
Ah Kee's Mother, An Epilepsy Patient's Family Member

Her son was 15 months old when he was diagnosed to have epilepsy, which would impair his intellectual development. Feeling anxious and helpless, Ah Kee’s mother dared not faced the fact and tried to escape from reality. Thanks to the good care of a group of medical professionals, Ah Kee’s situation has become stable. Although taking care of her son seemed an insurmountable task, Ah Kee’s mother managed to support one another through a group of patients’ family members. They even campaigned to change the Chinese translation of Epilepsy, which had resulted in social discrimination. Since then the situation has been rectified.

Feeling alone and helpless during early stage of rehabilitation
When my son was 15 months old, he was diagnosed to be an epilepsy patient . He suffered from Infantile Spasms Syndrome which would impair his intellectual development. Although the doctor had explained the disease to me thoroughly, I still could not face the fact that my son had epilepsy. I denied to accept the doom. Determined to change the course of my son’s fate and to prove that the doctor’s diagnosis was wrong, time and again I sought the advice of other neurological specialists. But after spending a lot of time and money on the matter, the result was no different. One day, I finally came to realized that I had to reconcile with what the doctor said. It was I who had been denying to accept the very fact all those days. As the doctor pointed out, it was a typical developmental reaction of every parent of epileptic children.

When my son suffered epilepsy in his early days, I thought it was only him being so unfortunate. I felt alone and helpless, not knowing to seek information of the treatment as well as the support from other patients’ family members. Information on epilepsy was scarce and rare 20 years ago. Fortunately, I came across a group of caring and loving medical professionals during the last five years when my son paid uninterrupted regular checks in hospital. Every time I met the doctors, I raised so many questions that enabled me for a better and fully understanding of the disease.

Benefitting from the treatment such as physical therapy, occupational therapy, linguistic therapy and hydrotherapy, my son’s conditions have become stable. I like taking my son to the hospital for weekly treatments. The doctors there have become my spiritual support and the hospital has become my son’s second home.

Looking for Rehabilitation from community
On one occasion, I saw a poster from the Community Rehabilitation Network in the hospital’s notice board which featured activities of epilepsy patients and families. I still remembered my eyes wide-opened because this was the first time I got in touch with such information and knew I was not alone. I was so excited that I finally got what I had been looking for.

My son is now 27 years old and he relapses everyday, that being part of his life. And if in a single day he does not relapse, I will take his seizures are on holiday. If his condition is stable for 2 to 3 days, I will take it as a long vacation, thanks to the doctors’ superb treatment.

The last 27 years during which he grew up with my companion, has not been easy. Ten years ago when I first saw that poster and got acquainted with a group of epilepsy patients and families, we have been supporting one another.

We have a better understanding of the effects of the drugs on those patients and how the disease affects them. For example, the Chinese translation of the name of the disease has resulted in discriminatory comments from other people, even among friends and relatives. Such discriminations will do no good to their social life, works and even their dignity. Only those who suffer from this disease feel that sense of humiliation. The Chinese translation of epilepsy connotes a sense of mentally deranged illness, has a vicious effect on them.

Campaigning to change the Chinese translation of Epilepsy
In May 2008, together with a group of friends from the Hong Kong Epilepsy Association, we went to Xiamen to participate in the 7th Asian Oceanic Regional Conference on Epilepsy. I spoke for the friends from Hong Kong, to express their concern on the misunderstanding of the Chinese translation of the name of epilepsy. Such misunderstanding has resulted in a subtle association with mentally deranged illness, which has adversely impaired the patients’ dignity. By doing so, we hope to raise concern among those neurological professional bodies in the Asian Pacific Region.

With the support of local medical professionals, we finally reached a consensus on the new Chinese name of the disease after many years of painstaking effort. In June 2010, we held a ceremony to officiate the launching of the new Chinese name of which literally means neurological disorder symptom.

The new name has been widely accepted by the community and the mass media. Occasionally, the old name will appear again and it is up to us to correct it. In time, I think we can put the record straight.

Be yourself
I sincerely hope those who suffer epilepsy can stand firm even in times of adversity, to breakthrough the confinements imposed by this disease and to lead a confident life. Be yourself , take a bold step forward and try to do things you want . In doing so, you will find the world different and confidence will grow.

Let us walk hand in hand together and support one another, in this way we will breakthrough the confinements of epilepsy and lead a brand new life.

Most of the epilepsy patients are intellectually capable, leading a normal working and social life. Only a small fraction of patients have intellectual impairments.

Taking diseases as friends
Lam Lan, a patient of spinocerebellar ataxia

Double visions made her think that she had merely got presbyopia, not realizing that she had actually got spinocerebellar ataxia. Walking has become a difficult task for Lam Lan, and she even falls at home easily.  Spinocerebellar ataxia is incurable and she can only watch her body functions deteriorate. The road becomes more and more difficult to walk, but the family keeps standing by her, patient friends encourage her, which has finally made her drop the idea of killing herself and accept the chronic disease willingly, and treat it as a friend.

When I was about 10 years old, my Mom suddenly could not walk, and the neighbours said it might be because she gave births to too many children, and had not taken care of herself properly. I felt puzzled because though there were seven kids in my family, yet it was common in those years. I heard my Mom mention her father also became unable to walk suddenly, and at that time I jokingly asked her if we would inherit the disease. Actually, we did not have any idea if it was hereditary then, and neither could we have imagined I and my siblings got the disease one after another. 
When my younger sister had the onset of the disease, she was over 40 years old. After having consulted the doctors, be they the western ones or Chinese ones, the causes of becoming unable to walk could not be traced. Until 2000 when my sister went to Queen Elizabeth Hospital for examinations, the doctor confirmed that she was suffering from spinocerebellar ataxia, which is hereditary. In 2003, I found myself walking unsteadily, and falling easily because I was unable to balance myself. I knew something went wrong, and thought that I might have inherited the disease too. Therefore, my sister suggested me going to hospital for examination together. After blood tests, cerebral scanning and nuclear magnetic resonance imaging, and etc., the doctor confirmed I too got the disease. I recalled that a few years before 2003, I found that there were double visions when I was looking at things, and I thought I just happened to have presbyopia, but after my daughter accompanied me to get a pair of glasses, I still could not see clearly. Now I know that it was the symptom of the attack of the disease. 
In the early stage of attack, I was walking like a drunkard, swaying here and there, but anyhow, I was still able to walk, so although the social worker of the community center suggested me using a walking stick, I ignored the idea because of the awkward look. Consequently, I fell one day on the street, and broke one leg bone, which rendered me unable to walk for half a year. Since then, I brought along a walking stick whenever I went out. No matter how my conditions worsened gradually, and now even I use my walking stick, I still fall because I cannot keep my body balance. Therefore, if I need to go out, what I have to do is to ride on an electric wheelchair. As there is a raised platform in front of the door, each time my husband needs to push the wheelchair out first.
At present, the medical field has no cure for or ways to stop the spinocerebellar ataxia from worsening. What we can do is to see our body functions deteriorating gradually, and finally we cannot even swallow food. I thank doctors who prescribed not only vitamins, but also tried to understand my different needs in my daily life and made the necessary arrangements. One example is that my flat was too small to accommodate the wheelchair, and the doctor wrote to the Housing Authority to apply for a larger unit, which was finally granted.
As my state of illness turned worse, I even fall easily at home. My husband had to opt for early retirement so as to take care of me. I really have to thank him and my kids for their staying beside me, and giving me great support. Though I always lose my temper, my husband tolerates me and understands me. In fact, at the initial stage of the disease, I had though of suicide, but what my daughter had said to me made me have the second thought, and therefore I quit the idea of killing myself, and insisted on living. In 2009, I was particularly happy because my son and daughter-in-law brought me along on a tour to Taiwan. Even the family members of my daughter-in-law went with me, and they did not give it a damn to my riding on a wheelchair. Everybody said I was very fortunate, and I was really happy.
A few years ago, a family member of a patient friend, Ms Tsao Yee Man, suggested us to set up the Hong Kong Spinocerebellar Ataxia Association. At the very beginning, setting up such an association saw much hardship, because patient friends could not move freely, which meant Ms Tsao Yee Man had to run about here and there. The association was finally set up thanks to her. At the association, I have made friends with many patients, and have observed that many patients’ conditions are worse than mine, and some are even unable to speak, which handicaps their communicating with others; despite this, they face life positively, and this has encouraged me a lot.
Though I unfortunately have inherited this disease, I still feel I have been lucky enough to be different form those with cancer or other diseases which made them suffer a lot. Now I have learnt to put those unpleasant things behind, and to treat this disease as a gift from Heaven, accepting it willingly and treating it as a friend.  I will receive it with hospitality and face my life positively.

Free flowing lines - Accept Emotional Diseases, treasure those around you
Winnie Leung

In her fourth year in college, she suddenly did not feel like doing anything, and was later diagnosed having got mood disorder. Watching her mother’s hair turning white, in addition to pursuing knowledge she decided to take care of herself and to treasure the time being together with the family. Life is full of hardships, but if there is the support from the family and friends, those hardships will be overcome.

When I was in my fourth year in college, I suddenly didn’t go to school. Neither did I brush my hair nor do anything. My family thought that I was worrying about the examination…
One dizziness revealed the disease
There was once I had not taken any breakfast and fainted on a street. I was vaguely aware that someone called the ambulance. Upon my waking up, I found myself lying on the bed in hospital, thinking I fainted because of low blood sugar and anemia. When I was going to be discharged from hospital, the doctor discovered that I was talking non-stoppingly and interfering with others. He then diagnosed me that I had got mental problems, and thus transferred me to Pamela Youde Nethersole Eastern Hospital for treatment.
Treasuring because of suffering from disease
At first my state of illness was unstable and dosages needed to be adjusted many times to stabilize my mood.  During my stay in hospital, I found that my mother’s hair had turned grey, and then white. I asked Dr. Chan Wai Hong , the doctor-in-chief, what I should do. He seriously told me to grow up. At first, I didn’t quite understand, thinking that I had been reviewing my lessons in the hospital ward, which meant I had done my duty as a daughter. Afterwards I read an article about how to be filial to parents, which made me retrospect. I released that I had cared only about pursuing knowledge, but had ignored the care and love given me by my family. I started to love myself, and took medicines on time in the ward. As I know I had iron deficiency anemia, I actively asked the doctor-in-chief how I could take care of myself. In addition, I started writing the diary, jotting down what I needed to improve and to empathize with the others. From all these, I learn to self-criticize and to accept opinions from others.
After lots of efforts, I was finally discharged! Since I have got the disease, I do not only pursue knowledge, but also treasure more the time being together with my family. Although there are lots of drawbacks with my job, with the support of friends and my family, I have the feeling that I am not alone. I have fallen in my work, but fortunately with the support from friends, family and colleagues, I have learnt the wisdom of hardship, which is to think positively, and to deal with things in a mature manner. When I was looking for jobs, thanks to Dr. Yeung Wai Song, who taught me to be humble in life, and to often accept others’ opinions; not to be arrogant, and should learn to be at peace with others, and not to be angry till sunset.
Retrospecting and envisioning
I am now working in a hospital as a nurse, and after those years as a patient, I know more about the needs of the patients. Therefore I have to learn how to love the patients. Besides taking care of their physical needs, I have to care for the psychological needs, offering them the whole-person care, which enables them to enjoy life, and not just living to survive. Nowadays the medical field is thriving, so we believe mood disorders can be cured. The colleagues in my department have given me the greatest encouragement. They share with me their working experience and their factors of success. In addition, I am most grateful to my doctor-in-chief, Dr. Chan Wai Hong and Dr. Chung Wai Sau, who have precisely dealt with my illness. Furthermore, I have to thank Mr. Man, Mr. Lee and Mr. Tsang for their encouragement, which enables me to have confidence in my work and possess my career even though I am a chronic patient.
Now science is prospering, and I believe mood disorders will be cured. I sincerely hope that my experience can become a blessing to others!

Our Lives Can Be Wonderful Too!
Chan Kwok Hung Chairman of Patients' Group For Diabetes, Northern District Hospital
Kun Kit Man, Vice-chairman of Patients' Group For Diabetes, Northern District Hospital

Both Chan Kwok Hung and Kun Kit Man are diabetes patients. After joining a patients’ group under Community Rehabilitation Network, they have found hope in their plight and learnt to live with the disease in a positive manner. They were enrolled in ‘Leadership Training Course for Diabetes’ which empowered their sharing skills. They hope to use what they have learnt to encourage fellow sufferers to live their best life.

We are patients with diabetes. Inflicted by the disease, we had been tormented physically and mentally, with our emotions at their lowest ebb. Luckily, 3 years ago, we joined a patients’ group for diabetes in Northern District Hospital, initiated by Senior Medical Officer Lau Kam Piu and Head Nurse Wu Po Pik. Thanks to them, together with the encouragements of specialist nursing staff Lin Lai Ha, Tong Mei Ling and Lee Man Ying, we were able to deal with the disease in a positive manner and find hope in our plight . By joining different activities of the patients’ group, we share our experiences as fellow sufferers, strengthen the ties among fellow patients and contribute to disseminate information on the treatment of diabetes.

“The Leadership Training Course For Diabetes” was sponsored by The Asian Diabetes Foundation. Based on the studies of developed countries which stress the importance of support among chronic disease sufferers, Professor Chan Chung Ngor and Doctor Ko Tin Choi , organized the training course, in the hope of encouraging communications among participants and improve their skills in moderating, sharing and shouldering responsibilities. It is their hope that graduated leaders will encourage those who are in their early stage of diabetes to lead a healthy lifestyle and act according to doctors’ advice, in order to achieve better treatment results.

We are obliged to join this training course. As fellow sufferers, we can encourage those who are in the same boat to lead a positive life. Together we can walk hand in hand to face diabetes and live a happy life.

Care For Your Body and Treasure Your Family
Leung Kin Hong, Member of the Hong Kong Stoma Association

Kin Hong used to be a healthy person until he got rectal cancer. He has become an ostomate after the tumor removal surgery. Once he felt very sorry for himself. But now he has learned to live with his stoma very well. More important is that the illness has brought him and his family closer together. Now he knows that he must treasure both his health and his family.

My name “Kin Hong” literally means “healthy” in Chinese and I had been healthy until I got rectal cancer.  Since I seldom visited doctors, I did not realize the condition until it deteriorated to the point that a part of my rectum had to be removed, and I had to undergo an ostomy.
I did not pay attention to the symptoms at the beginning because I had no particular discomforts. I just had a change in bowel habits and smaller than usual stool size. These conditions continued for almost a year. Since I also had persistent constipation, I thought I might have hemorrhoids. So I visited Lam Tin Polyclinic where the doctor gave me a digital rectal examination. He suspected that I had a tumor, so he referred me to United Christian Hospital for further tests. Finally, I was diagnosed with rectal cancer.  
The doctor told me that since the tumor was located close to the sphincter of the bladder, it might not be able to reconnect the remaining rectum to the bladder after the tumor removal surgery. Nevertheless, he tried to reconnect it by minimally-invasive surgery. Two days later, he told me the surgery failed, and I had to undergo an ostomy which created an opening in the abdomen for the excretion of wastes. I was very upset and depressed because this was totally out of my expectation.
However, once I had calmed down, I knew that I had to face the reality and continue to trust my doctor. So I got the ostomy surgery and then started the chemo. The side effects of chemotherapy caused me to suffer from orchitis and I had to remove one testicle surgically. Then I regularly visited the Chinese Medicine clinic at Kwong Wah Hospital for a period of time.
At first, I had to learn to use the stoma bag. I did experience leaks simply because the bags did not adhere well. However, once I acquired the skills, I got no problems at all. With advanced designs nowadays, people hardly notice that you wear a stoma bag. There are even special small bags for swimming. Unlike the bladder, the colon does not have sphincter to control the release of waste. Yet I have trained myself to excrete after dinner daily. And I can wear more fitted clothes now. 
I was introduced to the Hong Kong Stoma Association by the stoma nurse when I was discharged from hospital. I shared my experience with the fellow patients there. I also actively participated in their volunteer activities, such as hospital visits and seminars. I had been to the hospital several times due to abdominal pain during the first year after surgery. I felt my health gradually improved since I became a volunteer, probably because I had more opportunities to share experiences with others and I was happier than before.
Some people just whine and complain of their illness. I used to be one of them. I was around 50 years old at that time. I felt very sorry for myself. Especially when the first surgery failed, I was very disappointed. But now I have learned to live with a stoma quite well. More important is that this illness has brought me and my family closer together. My wife and I already divorced many years ago, but she visited me frequently while I was in hospital. Now we still have dinner with our children once in a while. I seldom saw my brothers and sisters for many years. Nevertheless, they also visited me frequently. My sister-in-law even brought me homemade meals daily when I was in hospital. The care and support of my family helped me a lot. We still stay close as a family nowadays.
I used to eat a lot of meat and deep-fried food. Now I eat more fruits and vegetables. I often go to schools to promote colon cancer prevention, encourage the public to maintain a balanced diet and pay attention to any change in body conditions. If I had sought early treatment, I might have cured the condition by simply taking medicines. So, do not hesitate to seek medical attention whenever you have any concerns. Always take care of yourself and treasure your family. After all, your family is very important to you.

Exchanging living experiences Seeking spiritual support
Tsao Yee Wah, a patient of spinocerebellar ataxia

Tsao Yee Wah, like her brothers and sisters, has unfortunately inherited spinocerebellar ataxia. She does not only have difficulty in walking, but in speech as well. However, she manages to see a way round when a problem arises, thinking out ways to solve problems showing up in her daily life. She is willing to share views and experience on the phone with patient friends, which has become her greatest spiritual support. Wearing a long face all the time does not help one’s disease, so take things slowly because difficulties can be overcome gradually.

Spinocerebellar ataxia is a hereditary disease, and among our six brothers and sisters, there are four who got it, and I am one of them.
In about 1991, I found I had some problems. One of which was that when I was trying to pick up a glass of water, my fingers dug into the water; and when I was walking, I felt unsteady, and I found I was unable to bend my legs. At first, I doubted I had got Parkinson’s disease, but the doctor said it wasn’t. But he could not diagnose what I was infected with. After a whole year’s repeating examinations, I was finally confirmed to have got spinocerebellar ataxia. And some time before this, the doctor had also confirmed my brother had got the disease as well.
At first, I had no idea what the disease was, and the doctor told me this is a disease which causes my body functions to deteriorate. At the initial attack, my state of illness was not too serious. Though I walked unsteadily, I managed to walk by myself and to carry on with my work. But after seven or eight years, my conditions worsened. I did not only have to rely on a walking stick, I was losing my speech too. As I felt I was approaching my retiring age, I decided to retire. About five or six years ago, I would fall even when I was walking with walking aids, and because of this, I crashed and injured myself at home. As a result, the ambulance was called, and I was rushed to the Accident & Emergency. Now, I use a wheelchair to move around.
I am no longer able to handle the routine household chores. Thanks to the comprehensive household services provided by the Hong Kong Society for the Aged(SAGE), every day there are meals delivered to my home for me and my brother, and the regular house cleaning and shopping are taken care of too, which solves many of our living problems. SAGE also sends specialists to teach us to do physiotherapy, including some stretching exercise or finger movement training.
In recent years, my state of illness has gradually worsened, and I even have difficulty in talking, which has necessitated my frequent deep breathing. My eye sight is deteriorating and the vision is narrowing, and now what I can see are the things right in front of me. I have to be extremely careful and patient and do things in slow pace. Even the telephone rings, I can just walk slowly to the telephone to answer it. If the caller doesn’t wait long enough, it is no big deal because safety is the most vital.
At home, time runs slowly, and I read, knit, do exercise and talk to patient friends on the phone to exchange living experiences. Patients with spinocerebellar ataxia will often come across problems not mentioned in books or seminars, for instance, when I was brushing teeth, water will flow to my lower jaw uncontrollably.  What can I do?  I will wear a handkerchief with a plastic base to avoid wetting the clothes; in addition, drinking can cause problems such as choking. What we can do is whenever a problem arises, we think of a way to solve it. This is mainly what we talk about during our telephone conversation. We are happy with this kind of exchange. In other words, this is one of the ways of achieving spiritual support. 
Many thanks to my sister who often accompanies to consult the doctors, and whenever I have any problems, I go to her for advice and help, she will promise to help. With the doctor’s encouragement, she set up the Hong Kong Spinocerebellar Ataxia Association, helping link up patient friends and organize activities. Her support for us is of vital importance.
When first learnt that I had got the disease, I was really upset, but when I had known other patient friends, we began exchanging with each other, encouraging each other, and the bad feeling was gone. I feel that if I wear a sad face all the time, other people will feel bad too, so why don’t I let go the unpleasant feelings, which surely will make people around me happier.
We should be positive when facing diseases, and handle problems with strength. If the problems cannot be settled, find somebody to discuss. Don’t just bear the disease in mind and feel the disease has crippled you, which causes you to fail in achieving anything. You better act like us, engage in as many activities as possible for support so as to disperse attention. No matter what happens, don’t panic or rush, there are things we can handle nicely ourselves.

Man proposes God disposes
Ho Kwok Ling, a patient member of Hong Kong Ankylosing Spondylitis Association

Usually only men inherit ankylosing spondylitis, but Ho Kwok Ling was chosen to inherit the disease. Having suffered from a chronic disease, some may opt for escaping, but Ho understands “Man proposes but God disposes”. Things are decided by Heaven but our path is created by ourselves. Though the state of illness has been repeating, she faces it positively and takes joining patient support organization as a cure for the disease. Now she and other patient friends are working for the benefits of more patient friends.

For people who got ankylosing spondylitis, the medical field pointed out that the ratio between affected males and females is 4 to 1, and generally only the males will inherit the disease. But the brothers in my family are free from it, while I am the only daughter who unfortunately has inherited it.
When my Dad was young, he had pains in the waist and the back, so when recalling the past, he might have been a patient of ankylosing spondylitis. I started to have symptoms of waist pain and leg pain in the early 1990s, but I had never thought of being affected by this disease. When people asked why my waist was bending more and more, I thought I was having osteoporosis. Until I got iritis and went to Tang Chi Ngong Specialist Clinic, then it was found what I had suffered from was Ankylosing Spondylitis.
At first I went to the Department of Orthopaedics of Tang Chi Ngong Specialist Clinic for follow-up check. The doctor in chief, Dr. Wong See Hoi, (the orthopaedic doctor of Pamela Youde Nethersole Eastern Hospital) had prescribed me a few drugs, but the effects were not good. He therefore suggested transferring me to the department of Rheumatology of Ruttonjee Hospital, where might give me better treatment. Dr. Wan Man Choi of Ruttonjee Hospital very patiently listened to my case, and gave me the most appropriate treatment, as a result of which, my state of illness turned stable. However, a few years later, as there occurred problems in my family, my mood turned very low, and my state of illness worsened. The pains came back, and when it turned severe, I even had difficulty in urinating because it was too painful. The doctor had to turn to prescribing me dosages of biological agents, which enabled my conditions to soothe. Anyway I got depression as well, and there were times that my moods had ups and downs, which more or less affected my state of illness. Recently, my conditions repeatedly turned worse, and I needed to change for another biological agents.
I have joined the Hong Kong Ankylosing Spondylitis Association, a patient support organization, for nearly 10 years, and now when I have time, I will go to help it with its affairs. To me, joining the activities of the Association is a way to reduce pressure. The members are on the same boat and so there are no conflicts, and all of us are working for the patient friends, encouraging the more passive patient friends to join our gatherings, enabling them to know more about the disease, which thus reduces the pressure inflicted by the disease.
There are people who will hide themselves after knowing that they have got certain diseases, being afraid of facing them or being discriminated. However, after having got the disease for many years, I deeply realize what “Man proposes, but God disposes” means. Just as what my Dad had taught me before, there are things that are fixed by Heaven, but one had to walk one’s own path. Therefore, no matter what happens, don’t run away from it. Instead, you should face it openly, so let’s keep moving.

Every day a happy day
Lee Ying Yee, President of the Hong Kong Epilepsy Association

Since the onset of epilepsy at the age of 3, Lee Ying Yee has been growing with fear. Affected by the disease, both her study and work did not turn out well. Feeling helpless and having a low-esteem, she fell into desperation. Once she started working as a volunteer accidentally, her life circle widened, and she was awarded “the Outstanding Persons with Epilepsy”. She even got hold of an ideal job through persistent studying. When there is a goal in life, every day turns out to be a happy day.

I have got epilepsy for many years. Recalling when I was 3 years old, I got high fever, and fell on the ground because of seizure of cramps. Dad and Mom didn’t know what happened, and Grandma said I was possessed.  Thinking that I was possessed by some spirits, Grandma went to ask for help from various gods. Until one day Mom and Dad brought me to see a doctor who told me I got epilepsy. Since then epilepsy and I have become life-long friends.

Helpless & Desperate 
During my growing up, bouts of epilepsy have brought me lots of inconveniences and embarrassment. Once I had the seizure on the street, and on waking up, I found many people were looking at me strangely. I felt incompetent, helpless and depressed. I ran home right away and covered my head with a quilt and cried. I didn’t tell my family what I had undergone, nor did I dare tell my friends about my disease; Mom also told me that as I always had cramps, and I didn’t know how to deal with it, so in order to avoid danger, she would not let me go outdoors. She even asked me not to date, marry or have kids. I became extremely depressed.
Because of long-term medication, the side-effects of drugs made me become fat. I withdrew from drugs once, but then I got the seizure of cramps on the street. After that I dare not withdraw, but I still complained and self-pitied myself, thinking that someone up there was not treating me fairly and I accused that someone of picking me!
Affected by the disease, I didn’t do well in the Certificate Examination. After high school, I studied a secretarial course for 1 year, and did some clerical work in my Dad’s company. The work and life were flat then. I had few friends, and I dare not reveal myself being a chronic patient. Seeing that my brother and sister, not only healthy, but also holding some noble jobs, I naturally envied them, and got a low esteem, thinking that I was the most useless in the family. Once I had the idea of giving up my own life. Recalling this, I felt lucky that I had not done that.
Turning point in life
In 1994, at a seminar on epilepsy held by the Hong Kong Society for Rehabilitation, I came across with Miss Hung, a social worker. With her support and encouragement, I began working as a volunteer, taking part in various activities of the Hong Kong Society for Rehabilitation, e.g. acting as the master of ceremony of medical seminars, sharing experiences with other patient friends, helping organize different activities, etc.  Through these, I recognized many patient friends and their family members, sharing experiences with each other, and I think I have got the sense of belonging that I have never had before.
Then I decided to look for a new job, and fortunately I was employed by a kindergarten. After changing work, I faced my life more positively. I worked hard and studied child education; at work, I frankly told my colleagues and the principal I am a patient of epilepsy. They didn’t discriminate me, and they evev encouraged me all the time. After continuous efforts, I have finally turned to be a child worker.
On March 16, 1997, with the leadership and encouragement of doctors, social workers and different professionals, we set up a self-help organization for patients with epilepsy and their family members, the Hong Kong Epilepsy Association. In March, 2009, encouraged by members of the executive committee, I became the president of the organization. In the early stage, I lacked the confidence of shouldering such an important post. Thanks to the support of doctors, social workers and executive committee and its members, I actively learned and practiced during this period, which increased my capacity and confidence in many fields.
At the end of 2009, our consultants and members unanimously supported the use of as the Chinese name in Hong Kong. In order to verify the name of , we set up a working group for the renaming of in March 2010. In April, I was elected the convener of the working group. Here I would like to express my thanks to those doctors, social workers and member friends for their trust that day.
With the effort of the group, on June 27, 2010, we finally held a ceremony to rename and a seminar on “Renaming for change, Creating harmony”, and officially declared we will replace with as the new Chinese name of epilepsy.
In October of the same year, I was recommended by the executive committee to attend the 8th Asian & Oceanian Epilepsy Congress held by International Bureau for Epilepsy, and I was awarded “the Outstanding Persons with Epilepsy”. At the congress, besides accepting the award, I and Miss Hung also briefed the progress of the renaming of the epilepsy in Hong Kong. This was the first big scale conference I have ever attended, which has rendered me a lot of experience, enabling me to know that there are many patient friends with epilepsy in other countries. It also made me understand that we should face our disease positively and lead a positive life.
On recollecting, since becoming a volunteer in 1994, maybe my soul has got somewhere to stay, plus friends’ concern, I only have had 2 or 3 slight seizures. In addition, I have found my life’s goal, hoping to be a good teacher, and to help other patient friends face life positively, and highlight the spirit of mutual help, with the hope that every patient friend can have a happy day every day.

Cherish Your Disease
Yip Chi Kin, Chairman of the Hong Kong Stoma Association

After surgery to remove his colorectal cancer, Yip Chi Kin lying in bed, with a stoma on his abdomen, pondering what his future would be. Two volunteers from the Hong Kong Stoma Association visited him who eventually lighted up his life. Since then he became an active member of the Association to advocate self-help spirit and supportive network among ostomates. He even helped fellow patients in mainland China to set up patients’ support group, sowing seeds of hope beyond Hong Kong. His advice is: Look forward and do not complain, accept the disease and learn to live with it. Life can remain to be wonderful.

I have been living a healthy life since my childhood. As a non-smoker and non-drinker who goes to bed and gets up early, I always think illness is miles apart from me. In 1990, I discovered dark red blood covering the stool which I thought was the result of hemorrhoid. After taking some traditional Chinese herbal medicine, the situation improved and I thought that trivial matter had been dealt with. I had little understanding of cancer which I took as necessarily involved great pain. Since there were no other abnormalities, I had no idea that it was a warning signal of cancer. Bleeding occurred from time to time and though I felt the need for defecation, there were no fecal matters egested. Until one day that bleeding was so excessive that I hurriedly visited a doctor. The doctor suspected it was polyp in my rectum and after rectal examination it was diagnosed as malignant tumor.
I was treated in the Hong Kong Buddhist Hospital. My attending doctor Yu Kwok Chiu explained that as the tumor was near my anus, both the tumor and anus had to be surgically removed. Consequently, a stoma had to be surgically produced on the abdomen for the purpose of diverting human waste from the body. I had no idea of what a stoma was and was not afraid of death, only concerned about whether I would be a burden to my parents in the future. My primary concern was whether I could take care of myself and Dr Yu explained to me that there were many patients suffering from the similar problems and led a normal life after the surgery. I took his words and agreed to have an operation.
Lying in bed intubated after the surgery, I was perplexed by the stoma. In order to relieve my concern for my future well-being, Dr Yu asked a nurse to call some volunteers from the Hong Kong Stoma Association to visit me. The next day came two volunteers from the Association. When I first saw the two elderly volunteers with good spirit, I hardly knew that they were fellow ostomates. Initially I thought I had to lie in bed with a bag worn over the stoma, like most patients in hospitals with a worried face. However, when they showed me they were carrying only ordinary plastic bags, I instantly felt relieved and came to terms with that arrangement.
Thanks to the two volunteers who have enlightened me, and also Dr Yu who encouraged me to be a volunteer to help other fellow patients. I joined the Stoma Association after going through the process of electrotherapy and chemotherapy. Later in 1996, I was invited to become an executive committee member and have been serving since then.
Over the years the Association witnessed remarkable developments. Due to the lack of resources and understanding of the disease in China, some fellow patients left the hospitals without any bag wearing over the stoma. We therefore helped them to set up self-help patients’ group in the mainland. We endeavored to help them to develop spirit of self-help and mutual support, as well as share experience with them. From my personal experience, encouragement and sharing from fellow patients are of paramount importance. Some elderly patients initially do not agree to the surgery, but after talking to fellow volunteers, they finally change their mind and come to terms with the treatment. I just hope I can stay healthy enough to serve the Association. I am glad that I can share my experience with fellow patients to relieve their anxiety and encourage mutual support.
Another thing that moved me during my illness was the persistent support from my family. When I was in hospital, my mother visited me daily to clean up my body. My family has given me tremendous support and I am grateful to them and love them.
My tumor was one of the most malignant and when it was diagnosed it was already in its terminal stage, therefore I had to undergo more electrotherapies and chemotherapies. It has been 20 years since then and luckily I am still healthy. Although I have a stoma on my abdomen, my life is normal as usual. Even daily working for 10 hours in open area poses no problem. I never ask why I have cancer, nor regret why take so long for diagnosis. I think we all should be forward-looking. Since I am cured after the surgery, I have to treat myself as a healthy normal person, not a patient anymore. The same applies to a person with short-sighted vision. Once he gets a pair of spectacles, his vision is as normal as other people. Please do not treat us as patients simply because we have a stoma on our abdomen. It is only an artificial opening.
For whatever diseases, we have to accept and face them with a positive attitude. I tell people that my stoma is like my baby, I have to take care of it so that it will coexist with me peacefully. The same goes to any diseases. Once you accept them, you have to live with them. Of course, the best way is to prevent disease in its budding stage, regular checks and seek medical advice immediately help to alleviate repercussions and increase the chance of being cured.

Don't be discouraged in times of difficulty.You're not alone
Rainbow, patient from the Hong Kong Lupus Association

Rainbow had lupus since her childhood. Due to the side-effects of the drugs, she grew up short and fat and for that she even once stopped medication. Although she was perplexed and disturbed during her adolescence, the experiences she has gone through enable her to treasure the life she now lives. With the help of religion, she also learns to appreciate herself as well as other people. Though life is not easy, she still feels much support from people around her. Her advice is: don’t be discouraged even besieged by diseases, one should learn to seek help when facing difficulties.

Hi, I am Rainbow, age 20, a patient of systemic lupus erythematosus, with an onset history of more than 10 years. I remembered when the disease was in its early stage of onset, it took me several months visiting different doctors before I was diagnosed to have lupus, making my mother very worried. In order to understand what the disease was, we had gone through many research materials and discovered that it was a type of autoimmune disorder which affected mostly women, causing overactive immune responses of the body against its own cells. Although the symptoms varied from person to person, the typical ones included unexplained fever, achy joints, skin rashes, and more than half of the patients had lupus nephritis. Unfortunately, all these symptoms besieged me. Since my physical condition did not allow me to concentrate on my studies, I had to ask for leave from school often. However, I did not give myself up and my schooling results in that year achieved even higher scores and I was awarded most compared to the entire period of my schooling. I was grateful.
Although my schooling was not affected, I had to face other problems. Because I was too young when onset occurred, taking large doses of steroid had hindered my physical development. I grew up shorter as compared to other girls of my same age and the drugs made me fat. I was often teased and discriminated in school, even when walking in the street I was commented by strangers as “obese” which made me angry.
People would not believe how old I was and in the end I just let them guess and did not bother what they said. Apart from taking medications to treat lupus, I had other drugs to offset the side-effects of steroid and improve my physical condition. When I was small I followed doctors’ advice strictly, but when I was older, I became worry about the side-effects of the drugs and even stopped medication. Unfortunately, the doctor found out and reprimanded me and eventually I had to obey. Alas! Are all doctors so unreasonable? When patients are feeling down, can’t the doctors just lend us support and condolences? Fortunately, all the doctors I know in the pediatric renal ward of Princess Margaret Hospital are kind and loving, especially Dr. Ma. She is a doctor with compassion, and with her presence gives me friendliness, confidence and relief. What I like her most is she often squeezes her own time even after office hours to join our activities just to be with us. No wonder she is so popular among our fellow patients!
Of course, the greatest support comes from my mother who has given up her job to take care of me day and night. When I was small and went to hospital every time, my mother would accompany me and bring me delicious food. In order to pay back my mother’s affection, I promised her once in my birthday occasion that I would take care of myself and not let her down. I have an elder sister who was jealous of me because of my mother’s full attention to me. However, when she understood what I was suffering she had let go of her jealousy. We have a cousin who had sclerema several years ago, the same situation arose when her brother complained about feeling neglected. My sister on the contrary comforted him to let go of his jealousy.

Nevertheless, steroid not only affected my physical development but caused ocular hypertension and osteoporosis as well. I had to go to the hospital every month for injection treatment for a period of six months. During my hospitalization, I came to realize that life could not be taken for granted and thus learnt to treasure all I had. I specifically treasure my music talent, which enables me to pass my grade 8 piano examination and targets for my performance grade challenge. My aspiration is to become a music therapist who can help people in need.
I started to worry about my future as I grew up. Sometimes there are things in life that make me anxious. For example, am I able to be pregnant? How will the disease affect my work and relationship? Will I not be able to get employed simply because I look too young? What will my employer think if I ask for sick leave often? However, all these worries are well taken care of by God whom I have known for a long time and grateful to. When I surrender to Him, I have also learnt to appreciate and love myself as well as care for other people. By doing so, I have created peace and joy inside myself. Although I still have a long and winding way to go, if God is with me, together with the support of my family and friends, I am not alone.
I have just completed a course on health services and administration. During my final year in that course, I did a project on lupus and came to know the Hong Kong Society for Rehabilitation as well as the Hong Kong Lupus Association, an organization set up to help lupus patients. Later, I joined those two organizations and was introduced by a social worker Miss Ho to the Hong Kong Arthritis and Rheumatism Foundation for hydrotherapy. I have acquainted a lot of fellow patients since going to hospitals and during hydrotherapy. I am glad to make new acquaintances and become friends, especially those in Princess Margaret Hospital. I am willing to be with you all, and if anyone of you feel down, I will lend my support to comfort you. May be you don’t know me, there are other compassionate people in society, together with voluntary agencies like the Hong Kong Society for Rehabilitation and the Hong Kong Lupus Association, surely you can get support somewhere around you. Don’t give up even in times of difficulties and don’t forget to seek help, you don’t have to shoulder the burdens all by yourself.                      

(This is the translated copy from Chinese version)

Flower of Hong Kong
Ng Ka Yan
Occupational Therapist II
Patients can participate in various group activities during hospitalisation. The author of this article has joined the writing group and demonstrated creative writing skills by describing the mood and depicting positive thinking in the article.
Hong Kong Flower by Anonymous
Kapoks stand between spring and summer. Carried by wind, the flowers scatter down and rest on the shoulders of passers-by.
Autumn is shaped by those bright orange and brown maples leaves. Look! The hills and ridges afar are clad in lush green and sprinkled with dots of maple leaves, colouring up the season.
The dry wood is hard but immortal, precisely just like winter. The dry wood is at the remainder of its life. It awaits the passage of winter and the time to shine again at the first touch of spring. 

Life is like seasons. It changes just as seasons change. Like the dry wood, as long as it is rooted in the soil, life surges back when spring takes over winter. It will be reborn and new leaves will come out.

RA, Not a Dead End
Grace, RA Patient
I started to have swelling, heat and pain in my limbs and joints for unknown reasons in late March1998.I therefore went to consult a private doctor and a public hospital for medical consultations. My family doctor then referred me to Tang Chi Ngong Specialist Clinic and Queen Mary Hospital. They finally found the causes of my pain. I was diagnosed with rheumatoid arthritis (RA). Looking back at the past six months, I did not get better with medications. Even worse, because the joint pain was so severe and unbearable that I could not move my entire body except for my eyes. Time was passing slowly and each day seemed like a year. I did not see any prospect for myself at all and I started to have suicidal thoughts. However, when I thought of my elderly grandmother and my family who have loved me so much, I abandoned the idea of suicide.
I tried different treatment methods later on. These included medication, physiotherapy, occupational therapy and clinical psychological counselling. I also undertook surgeries to replace some small or large joints. The pain has finally reduced, though it still came back occasionally. During that period, I actively took part in patient self-help groups and learnt several things.
  • Understand your disease – live with the disease in harmony ;
  • Always communicate with healthcare professionals - be a responsible patient;
  • Use patients’ instincts – take care of yourself, help other patients and care for each other;
  • Cherish your life – always be grateful and respective;
  • Live an abundant life – nurture other interests, live a wonderful life, and be optimistic and positive; and
  • Contribute to the community - make good use of time, put your ideas into practice and join voluntary work.
These 16 years were a period of hardships and training, but I leant to put words into action and try my best to help people with the same disease. I will also be grateful to those who have cared about me and helped me face the disease in a responsible and positive way. I have joined voluntary work for 15 years, serving a number of patient self-help groups, healthcare groups and rehabilitation organisations. I learnt a lot from volunteering. It has made my life wonderful and meaningful.
Here, I would like to say thank you once again to those mentors who have taken good care of me, helped me in the treatment, guided me through the way and given me inspirations of life. I hope I can continue to work with them in serving the community in future. Let’s work hard together. Let’s shine and glow in life!
RA patient
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