Thirty-six year-old Shahdar Bin Kasa was in his early twenties when he experienced his first relapse, but almost a decade passed before his second. His MS diagnosis plunged him into a deep depression, but following rehab, and with the support of his wife Zulia, that dark time is a long way behind him. Now he has a determination to raise awareness of the disease, tackle stigma about disability and educate people that it is not a condition that can be treated with traditional remedies.
The start of Shahdar’s story is one that many will recognise: early starts and long, long hours at work followed by evenings watching the TV to unwind. One evening when the subtitles suddenly split across the screen he put the double vision down to tiredness. After a few days his vision was still blurry so he went to the health centre and received a referral for an MRI scan. The scan was scheduled for a month’s time and in those few weeks his vision corrected itself so he skipped the appointment and thought nothing more about it.
Fast forward eight years. Shahdar had continued to progress in his career at the Customs Office, rising to the position of Senior Officer, he and Zulia were enjoying life in the city as a young married couple, and he was a keen sportsman in his spare time. Then he slipped over in the toilet and it set in motion a chain of events that led to his diagnosis.
‘It didn’t hurt at the time and I just got back up laughing, but later I couldn’t sleep because I felt my whole body was aching. I couldn’t move or even adjust my laying position.’
Over the following weeks Shahdar was seen by many medics at health centres and small hospitals. Initially he was diagnosed with a slipped disc and referred for surgery, but he developed numbness in his left arm which progressed to a weakness down his entire left side that was so debilitating he had to start using a wheelchair. An MRI scan resulted in his MS diagnosis.
‘I asked if I would still have my back surgery but they said ‘if a car is broken, it is useless to repair a tyre when the major problem is the engine’. My case was referred to Kuala Lumpur Hospital after that.’
The speed with which life changed, being told how much treatment would cost and learning how MS might progress, put Shahdar into a deep depression characterised by extreme mood swings and tantrums. ‘I just thought ‘why me?’ At the end of 2019 he was admitted to Cheras Rehabilitation Hospital for a month of therapy. That month turned things around for him and shows that psychosocial support is as important for MS patients after diagnosis as drug treatment.
‘I changed from being really down to being super positive. It was a wonderful experience. I want to share with those diagnosed with MS, don’t feel down and do think positively. Yes, with MS our activities are limited, but we must try to find a hobby that suits our condition now. When I attended counselling during my rehab I was advised to find a new hobby that could help me to express myself, so I would not keep everything inside. Keeping the pressure inside us can make us more stressed.’
One of those new hobbies was cooking and during the pandemic Shahdar was cooking and delivering food in the local community. He has also taken up photography and video making and is forging a social media presence to raise awareness of MS and tackle stigma.
‘I am trying to raise awareness about MS being a chronic disease. I had an experience when I was in hospital queuing for my medications where an old lady who asked me about my condition proceeded to tell me that actually I’d had black magic used on me and that it’s not a real medical condition. Another time when I had to go to a hospital I was scolded by my cab driver for using a large wheelchair because he was afraid that the car would get scratched.’
‘MS is rare in Malaysia so even when we try to spread awareness people just ignore it. But we need to hear from patients about how they carry on with life and how they manage their time and energy. When people ask I tell them it is a nerve-related disease and in return they tell me to go for traditional massage. When I try to tell them MS cannot be treated with traditional massage they don’t believe me. I hope that one day people will understand that some diseases can only be treated with medications from the hospital.’
For Shahdar, his access to treatment is uncertain and the cost is too much to bear alone. He finally began treatment in early 2021, nearly two years after diagnosis, when he received funding from Zakat, the Muslim support fund. This funding was for two months of interferon-beta. After that there was a ten month gap before he started a clinical trial of a new treatment, ofatumumab.