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.


Turning Point
Chan Man Kuen, A patient member of the Hong Kong Epilepsy Association

The drugs treating epilepsy had seriously affected Chan Man Kuen physically and mentally. She wanted to quit her job as a nursery worker but was opposed by her family, leaving her in dire distress. At that time she got in touch with The Hong Kong Society For Rehabilitation, through which she learnt more information on epilepsy. After painstaking efforts to improve herself, Man Kuen’s situation has become stable and has been employed as a program assistant by The Hong Kong Society For Rehabilitation. She firmly believes that if employers can give epilepsy sufferers a chance, it will be a tremendous encouragement to them.

One night, my sister while sleeping beside me, discovered that my body experienced rhythmic seizures. Startled by my convulsion, she immediately alerted mother and I was rushed to the hospital. I was diagnosed to have epilepsy. From then on, taking medication had become part of my daily life. There have been minor relapses during which I am conscious of how the disease affects me. Because I know what will happen to me when the seizures attack, I feel embarrassed and will rush to the toilet to hide myself whenever the symptom arises. My studies were seriously affected and I finished my secondary school education with much difficulty.

After graduated from school, fortunately I found a job in the childcare profession. However, side effects of the drugs emerged which seriously affected my body and even my work. I decided to quit the job but was met by objections from my family. I was under tremendous pressure and often cried. At that time, I got in touch with the Community Rehabilitation Network (CRN), which had completely changed my life. Through the courses hosted by CRN, I had a better understanding of epilepsy as well as drugs treatments. After experimenting on different drugs, my conditions have become stable with minor relapses.

When the Hong Kong Epilepsy Association was founded, I was eager to join it to get acquaintance with fellow sufferers. Many in the same boat faced more acute problems in their diseases, their relationship with family members and finding jobs. As compare to them, I was more fortunate and should lend a helping hand.

To give is better than receive. Through the Association I learnt to publish newsletters, organize annual meetings as well as community promotional activities. Such participation has resulted in work satisfaction and fulfillment and reasserted my ability, thus allowing me to grow spiritually.

Epilepsy still bears a socially negative label and faces discrimination in the working environment. However, I was fortunate to find an office work after painstaking effort to improve myself. Thanks to the Hong Kong Society For Rehabilitation, I have been employed as a promotional assistant, which allows me to travel to different hospitals to coordinate rehabilitation activities and paper works. Although I still experience sporadic relapses, I am accepted by my colleagues. Instead of casting an eerie eye on me, I am greeted by sympathetic condolences and nothing seems abnormal. I am not being discriminated and working here has increased my confidence as well as my sense of belonging.

I hope all employers can keep an open mind on those who suffer from epilepsy. Give us a chance to prove our capability. With your support and encouragement, I am sure we can work and contribute to the society .

As for our fellow sufferers, we should strive to show our confidence. With our candidness and whole-heartedness, we can gain the trust of others. If we belittle ourselves, how can other people trust us?

Tomorrow will be better
Wong Sai Wah, a patient member of Hong Kong Ankylosing Spondylitis Association

Wong Sai Wah, the leader of a Fire Services team with a strong physique, suddenly could not get out of bed one morning, and after a series of examinations, he was diagnosed to have got ankylosing spondylitis. As he deeply realized how one would become when being affected by diseases, he positively shared with other patients his experiences, in the hope of helping others in the same boat, telling them only if they are not discouraged, tomorrow will be better.

I was the chief team leader of the Fire Services before retirement. Working on a fireboat, I was in a very good physical condition, and passed the physical examination every year. One morning in 2002, I could not get out of bed suddenly, feeling severe pains in my hip joints. I hurriedly went to the Accident & Emergency of Pamela Youde Nethersole Eastern Hospital. I stayed in the Department of Orthopaedics for a few days, undergoing a series of examinations, but the causes could not be found. What the doctor could do was to prescribe me some pain killers to soothe my pains.
I went on with my work, but the pains still bothered me. Whenever I wanted to stand up, the pains were so severe that I had to wait for a while before I could stand up. Climbing up and down the stairs was no easy task. Even striding across the two feet’s gap between the fireboat and the pier became an impossible mission for me. Within only three months, my weight went down to about 50 Kg from more than 70 Kg. Later, even my cervical vertebrae turned stiff, making me unable to raise my head to look upward. I went to Pamela Youde Nethersole Eastern Hospital to undergo tests repeatedly and the liver, kidney, gall bladder and lymph were all tested. Even the bone marrow aspiration and biopsy was taken. But the cause had yet to be found.
During July and August of 2003, I went to hospital for follow-up check, it happened that Dr Lee Ka Lai, doctor of the department of Rheumatology came to the Department of Orthopaedics to discuss some problems with my doctor, and my doctor mentioned to her my strange case. Dr Lee suggested my doctor to transfer my case to the department of Rheumatology for follow-up. After the blood tests at the department of Rheumatology, it was confirmed that I had got ankylosing spondylitis.
Dr. Lee Ka Wing of the department of Rheumatology prescribed me a drug for treating osteoporosis, and it was carried out in the form of intravenous injection. Two weeks after the first treatment, I felt the whole of myself become relaxed, and some of the movements which could not be performed could be done then.
I felt lucky because I came across the rheumatic doctor before my state of illness worsened further; and furthermore, the effects after the first medication were satisfactory. The regretful thing was that my fingers had become deformed, which required physiotherapy to improve on them. Now I often do exercise, practice tai chi and undergo water treatment, hoping to maintain the mobility of joints. In 2005, I joined the Hong Kong Ankylosing Spondylitis Association, a patient support organization, in the hope of sharing with the new patients my own experiences. As I very much understand what the worries are when facing the disease, I hope my experiences will be of help to those on the same path.
Every one may have a chance to get certain disease, and I have some colleagues who have got cancer and have gone. I am still lucky as compared to them. Even though I have fallen short of the best, I have been better than the worst. I believe when there is expectation, there is hope. Don’t be down-hearted, and tomorrow will be better.

Understanding his needs
Mrs Tsang, a family member of a patient with Ankylosing Spondylitis

Mrs Tsang’s husband unexpectedly was diagnosed to have got ankylosing spondylitis. She felt very upset and the pressure was great. She has no way to help him, and what she does is to understand his needs, offers help at the right time, and helps him before he asks. As she understands that being a care-taker, the most important thing is to know what a patient really needs.

My husband worked in the Fire Services. One day in 1997 he suddenly felt pains at the knees and had difficulty in walking. At first, we didn’t know what the problem was, thinking that it would be alright after consulting the bonesetter. However there were no improvements in his conditions, and after a few months, the swelling at the knees still stayed. Without any alternatives, he went to the Accident & Emergency of the hospital, and stayed there for examinations. But the causes were yet to be found.
It happened that one day I accompanied him to hospital for physiotherapy, and there we came across a lady. Recommended by her, we went to a private doctor specialized in Rheumatology for consultation, and he treated him according to his state of illness. After which he confirmed that my husband had suffered from ankylosing spondylitis. Later, he went to the department of Rheumatology of Pamela Youde Nethersole Eastern Hospital for follow-up.
As his state of illness was not stable, he had tried quite a number of drugs without desirable effects. His doctor suggested ordering biological agents from abroad for treatment. However, as the prices were extremely high and the order had never been made. Later, the biological agents were brought to Hong Kong for trial use for free. After taking it, my husband’s condition turned stable.
In the beginning of getting the disease, I didn’t know how to worry because I really didn’t know what would become of my husband’s illness. At that time, I had no idea what the disease was, and I completely did not know what kind of disease it was. Later I knew the disease had something to do with heredity. His father had pains at the heels two years before his death, and my husband also had pains at the heels a few years before. Yet there were no ways to find out why, and the pains disappeared after one or two years. Therefore my husband did not bother about it any more. Perhaps, these are the early early ssymptoms of ankylosing spondylitis.
When my husband was diagnosed having got this disease, I certainly felt upset, and had great pressure too.  As the disease did incur on you, avoiding it was no way to solving the problem. What I could do was to face it positively. At the initial stage of the disease, as he did not know what he had suffered from, his tempers grew very bad, and I had no way to help him. What I did was to ignore him when he lost his temper, letting him cool down himself. I am not a doctor, so I have no way to cure him. I can only try my best to understand what he needs, and fulfill it at suitable time. For example, when he wants to get up to get some drinks, I will go to get him a drink right away; and if he wants to go to toilet, I will judge whether he is able to walk there on his own. Will the short distance be a difficult task for him? Does he need my help? Anyway, I won’t wait for him to ask for help.
Perhaps I myself am a person who knows how to take care of others, so I deeply agree that being a care-taker, the most important thing he/she should do is to understand the real needs of the patient, which itself is a great help to the patient.

The exit for mind
Leung Wai Ting
Occupational Therapist II

As time goes by, are you tired of your life?
Are you tired of facing a heavy workload and people of all kinds everyday?
Why not go out and walk away from the hustle and bustle?
And run about on the green meadow,
And swim and surf in the blue sea at the beach.
When you look back, all those things are not important anymore.


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