I’m a don living with MS, this is what I wish people knew about the disease

I woke up one day in 2018 and I couldn’t see properly. It is like cobwebs had been spun across my eyes. My first stop of the day was at an eye care facility and the optometrist recommended that I rest more.

A few days later, the blurriness had morphed into a vile of darkness. I was struggling to find my way around the house.

It was weird and mysterious. Yet, it was not the first time that something as strange as this was happening to me.

At 17, I remember people telling me things and me not being able to hold the information in my mind. My memory, from time to time, felt frayed and fleeting.

I also had occasional slurred speech. Since it was something that used to happen momentarily, I didn’t tell anyone about it. Instead, I got a little notebook that saved me from a lot of trouble. At the end of the day, while going through it, I would laugh at the extent of my amnesia.

Then, I was living in the UK with my family; my father was an ordained minister serving in the church of England. Both of my parents are now deceased.

These peculiar phenomena vanished as I navigated adulthood reappearing again when I was pursuing my PhD in Cancer Genetics. Some years prior, my mother had been diagnosed with breast cancer and I had realised that her response to the drugs was different from that of Caucasian patients.  As such, my research interests are in the unravelling and understanding of the African Genome in matters Cancer.

When I passed out during one of my research sessions, my mother, a nurse by profession, dissuaded me from taking the prescribed medication and attributed the event to stress.

In 2009, after graduating, I decided to return to Kenya to continue with my research and take up a job at the University of Nairobi as a lecturer in the Department of Biochemistry. I had been away for so long and I was having many challenges settling in.

In the first three months, I noticed that I was dragging my feet and I had this frequent throbbing headache. “You need to relax,” my mother would advise.

After my eyes became blurry, it was hell, so I went back to the clinician. They referred me to a retinologist for an MRI scan and there was this paper that caught my attention. MS—an abbreviation for multiple sclerosis accompanied by haunting question marks­­—a cruel twist of fate. Multiple sclerosis is a chronic disease of the central nervous system; an autoimmune disease in which the body fights itself.

I didn’t tell anyone about it or even go for further tests. I turned to prayers. As a biochemist, I should have known better and sought treatment then, but I was afraid for my life after the diagnosis. I was afraid of death.

According to the National Multiple Sclerosis Society, more than 2.8 million people are living with Multiple sclerosis (MS) worldwide. Multiple studies further show that women are disproportionately affected as they get the disorder nearly four times more than men.

In the years that followed, I tried everything. To get enough sleep and even cut weight yet things only got worse. While on two different trips, one to Egypt and another to Cuba, I had episodes where the left side of my body failed me, and I had to sit or walk with a helper. I still managed to take a few photos, craftily camouflaging what was happening to me.

At work, things were not easy. With the staggering and slurring speech, some of my colleagues thought that I was an alcoholic. Partly because this would dissipate as the day unfolded. One of my colleagues came to me and said, “Whatever is happening in your life, you need to sort it out. This is not a good show,” she said.

And it is not uncommon for MS to be misunderstood. According to experts and other patients that I have interacted with in the multiple sclerosis association of Kenya, a support group for individuals with MS, many of us feel misunderstood especially because the symptoms can come and go after a while.

As these symptoms persisted, there are those who said that I had been bewitched and I remember asking God Why He would let that happen to me.  The loss of both of my parents had really left me devastated and I was desperate to see my two daughters through their various milestones.

Time and time, I would get treated for various conditions and many specialists pointed to Tuberculosis (TB) because patients with MS present some symptoms like those of TB patients. It was the staggering that led the physician to refer me to a neurologist. It didn’t take long before we had a name; the one that had been stashed in my office drawer for seven years. I was diagnosed with relapsing-remitting MS, which means that the symptoms get worse followed by recovery. That was in July 2021. 

Although the underlying causes of MS remain elusive, one connection may lie in the interplay between MS and the Epstein-Barr virus (EBV), a common human virus that spreads through saliva. Researchers from the Karolinska Institute in Sweden have further explored this connection, saying there is compelling evidence that antibodies intended to fight EBV can fuel the progression of MS.

Even after diagnosis, it took some persuasion before I could start using a walking stick and join the MS support group. In reflection, I am glad that I joined the association because I have found many people who relate to my condition. We call ourselves “the staggering warriors.” However, treating the condition is very expensive as I must go through chemotherapy sessions every six months. Thankfully, my employer meets the cost. I have made a lot of progress including gaining my eyesight back. At home, I even walk around without a walking stick.

To suffocate the grip of fear, I started to reveal the truth about my journey to some of my colleagues and students. This is in line with this year’s World MS Day theme, “building community connection, self-connection, and connections to quality care.”

SIDEBAR

MS Day to be marked at Chiromo, University of Nairobi

Multiple Sclerosis is a disease in which the immune system eats away at the protective covering of nerves. In MS, resulting nerve damage disrupts communication between the brain and the body. There are many different symptoms, including vision loss, pain, fatigue and impaired coordination.

Tomorrow, May 28, The Multiple Sclerosis Association of Kenya will mark the day at the University of Nairobi (Chiromo Campus) from 1 pm.

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