Hafizuddin bin Mohd Hilmi is twenty years-old. He was diagnosed with MS when he was 13 years-old and away studying at school. His remaining years at school were characterised by bullying from other students who did not understand why he kept being allowed to go home at the weekends. Here his Dad Hilmi talks about his diagnosis and the funding of his treatment, and Hafizuddin tells us about learning to live with MS and his experiences at school.
Hafizuddin got his first relapse when he was 12 years old and we were in Melaka for holiday. The doctor suspected he had Bell’s palsy because the symptoms were drooped facial muscles and drooling. After he took steroids he was okay. The following year he went into a religious boarding Tahfiz school for secondary education. He had a relapse, and it was worse than before Doctor Shanthi confirmed he has Multiple Sclerosis after an MRI scan.
When Hafizuddin was diagnosed with MS we were told this disease is rare and has no cure. I was sad that my only son got this disease. We are not highly educated people and we wished for our child to be able to have a better life and better education so that he can live more comfortably than now. But because of this disease he cannot keep pace with learning in school like his friends.
When we got an explanation from the doctor and did further research we understood this disease can be controlled, but if it’s not treated it can make a person permanently blind and possibly paralysed. He was only eligible for interferon-beta medication because other medicine has stronger effects and was not suitable for his age. The first time I heard the price of it I was stunned. interferon-beta is RM300 for every injection, three times a week. So, in a year it costs about RM50,000 ($11,250).
Fortunately I’m a government servant and in Malaysia the government will fund medical assistance for you and your dependents – your spouse, children and parents. It does not matter that I have a low-ranking position, in terms of medical aid we are equal. The support lasts up until the age of 18 and that can be extended to 21 if they are still under education. However, if you have a chronic illness they will continue funding for as long as I serve in the government, or until I die.
After three years of interferon-beta the doctor saw his MS become more aggressive and proposed to change the treatment to fingolimod pills, which he had to take daily. One pill cost RM200, so in a year about RM73,000 ($16,300). I once again brought a letter from Hospital Kuala Lumpur (HKL) to my administrative office and they approved my application and provided payment every six months.
He was on that treatment for two and a half years. After a long bout of flu the doctor realised that fingolimod was not suitable for him. One of its side effects is that it lowers white blood cells. This had compromised his immunity and he was catching minor illness quickly. The doctor recommended changing to Rituximab, which is the one that he is taking now. While making the switch from fingolimod to rituximab he had a relapse so severe he was temporarily paralysed. He was given steroids, IV and a plasma exchange. During the 12 days in Kuala Lumpur Hospital we cried every day because we had never seen our boy suffering so much. That was the hardest time for us.
Hafizuddin is fortunate to have received medical funding at every step because I am a government servant. There are other MS patients without government aid who cannot afford to pay for the treatment. Or there are patients who get diagnosed at a later age and the damage may already be permanent. I feel fortunate to get assistance from the government and I am very thankful that Hafizuddin was diagnosed early and received the best treatments proposed by the best doctors.
There are a lot more MS patients in Malaysia now. When Hafizuddin was diagnosed in 2016 there was about 1,000 patients, now it’s between 2,000 and 3,000. Many of the patients come from the poorest part of society and it is difficult for them to access treatments and medication. Even for me who has the privilege of accessing the medical fund, it such a pressure waiting to receive the medications. I would like to urge the government to please take note and take it to the parliament because the disease is all over the country.
I used to be hospitalised about once a year with relapses. I got weaker and weaker since the disease had attacked almost all parts of my body. I had to miss a lot of school, I couldn’t finish my SPM [Malaysian Certificate of Education awarded in high school] on time because I needed to take medical leave. The worst part was when I had to take very long leave, but I had no choice except to accept it. The only way to reduce the pain was to sleep frequently. I felt down, empty and lonely when I couldn’t go to the school.
Some of the other students could accept it, but some of them couldn’t. Some hate me because they don’t understand what I have gone through with this disease. They questioned why I always needed to go back on weekends. I replied that if they wanted to be like me then they should ask God and see if they could go through it. I told them to be grateful.
At the end of 2021 I had a relapse so bad that within a few days half of my body was paralysed up to my neck and I couldn’t completely lift my head. I thought my mother was joking when she said I would need to wear adult diapers.
There were changes in my treatment and now I can walk, talk, sit, see and think. But I find that my memory has been affected. My mind became slow and when I receive orders or directions I forget it 15 minutes later. It is very hard because people get mad at me even though it is not intentional.
There is no one of my age who understands my condition. The ones who support me are the doctor and my family. When I felt like I was about to give up and just wanted to stay at the hospital and do nothing they motivated me to lift up my spirit.