A Ghanaian and survivor of multiple sclerosis, Nathalie Busari, tells GRACE EDEMA how she regained her sight and the ability to use her hands after receiving intensive treatment

You were a survivor of multiple sclerosis. What is it all about, and how did you first notice it?

Yes, to be honest, it is a condition that is not widely known, not just in Nigeria but in many places. A lot of the people I have met in the UK, whether white, black, or Asian, have all said the same thing: when their doctors told them it was multiple sclerosis, they had never heard of it before.

I think perhaps only one or two people have told me they knew someone who had it, so they had some understanding. I have a friend who lives in the UK. She is of Jamaican descent, a black woman, and she was aware of it because her brother had it first.

In my case, I would not say I was lucky to get MS, but I was fortunate that it was recognised early because I lost vision in my right eye, which is one of the common signs of MS. I believe they call it optic neuritis. It is one of the primary symptoms of MS. I experienced it, but I did not know what it was at the time. It initially felt like eye strain or stress.

So, I did not think much of it. I simply took-and went to bed. When I woke up the next morning, I still did not realise something was wrong, although my vision was slightly blurry. I ignored it.

It was only at the end of the week when I was applying eyeliner that I noticed something was wrong. I closed my left eye, leaving my right eye open, and although I could feel that it was open, I could not see anything. That was when I realised there was a problem.

I contacted my local doctor, who examined my eyes and said she wanted a specialist to take a closer look. She referred me to the eye clinic at the hospital. There, I met a doctor who conducted several tests. He told me that the optic nerve in my right eye was blocked, meaning no light was passing through, which was why I could not see properly. However, he did not prescribe any medication.

Later, I learned from neurologists that the eye doctor should have referred me to a neurologist immediately upon noticing this issue. Instead, he waited until my eyesight returned after three months before sending me to a neurologist.

When I eventually saw a neurologist, I underwent several tests, including a head MRI scan and a full-body MRI. However, I discovered that I was pregnant with my second child. So, I had to postpone some of the scans. They performed only a head MRI, which was considered safer during pregnancy.

What happened next after you gave birth?

After my son was born in September 2016, I underwent further tests, including a spinal tap and a nerve conduction test to measure the speed of my nerve signals. I also had a full-body MRI scan. I went to the hospital with my sister and my child, but the neurologist I met was not an MS specialist.

She was a general neurologist, so she said the tests indicated two possibilities: either it might not be as severe as we feared, or it could be multiple sclerosis. That was when I burst into tears because, although I did not know what MS was, it did not sound good.

At that point, I decided that I would focus on my pregnancy and not dwell on whether it was MS or something else. She did explain what it was but advised me not to look it up online, as there was a lot of misleading information, particularly from American sources. She wanted to ensure I did not scare myself unnecessarily.

After she told me, I convinced myself that I did not have MS—that it was the other, milder condition she had mentioned. So, I went ahead with my pregnancy without thinking much about it. After giving birth to my son, I received a letter from the neurology department requesting me to return for the remaining tests. Once I had completed them, I was invited back on 13th December, not long before Christmas. That was when they confirmed, unfortunately, that I had multiple sclerosis.

How did you take the news?

At the time, I was holding my newborn child, and I immediately sensed that something was wrong. The neurologist I had seen previously was not the same one this time. There was also another person in the room, introduced as an MS specialist nurse, which confirmed my fears.

The neurologist explained everything to me and compared my MRI scan from the beginning of the year to the one taken after my son was born. She could see that the MS had spread. I had lesions on my brain—what they call “lesions” are actually scar tissues—and on my spine.

However, she was unsure whether the spinal lesions had been there previously, as she had been unable to perform a full-body scan due to my pregnancy. They could have been pre-existing or newly developed, but what she was certain of was that the disease was spreading rapidly.

Because of this, she told me I needed to begin treatment immediately.

The neurologist explained that due to the aggressive progression of my condition, I required one of the highly effective MS therapies. I chose one, but unfortunately, it meant I had to stop breastfeeding. That was incredibly difficult for me, and I was very upset about it.

What relapses did you experience immediately after giving birth?

Interestingly, I did not experience any relapse until the pregnancy hormones left my body. When I asked my neurologist why, she explained that in some cases, pregnancy hormones suppress the disease and keep it at bay. However, this does not happen to everyone.

About a month after giving birth, when the pregnancy hormones had left my system, my relapses began. I was placed on treatment. Before I could proceed with a stem cell transplant, something my doctor had recommended because none of the other MS treatments were working, COVID-19 hit, and we went into lockdown.

Under such circumstances, it was not advisable to undergo a procedure like a stem cell transplant, which destroys the immune system, at a time when immunity was crucial. So, I had to remain on alternative treatments until the situation with COVID stabilised.

In 2021, my doctor raised the possibility of the transplant again. Initially, I was unsure about it, assuming it was just another disease-modifying therapy. However, she clarified that it was a procedure designed to ‘reboot’ the body. The stem cell transplant functions similarly to a bone marrow transplant.

How has life been since then?

I have been living with this since 2021. Every year, I undergo an MRI scan to check for new lesions. If a new lesion appears, it means the transplant has not fully worked, and I would need to resume treatment. So far, I am still waiting for my latest MRI results, but since 2021, I have had no major relapse or new activity on my brain or spine.

Since then, I have been living with MS, but it has remained inactive, what doctors call ‘remission’. I hope it stays that way. I have also been advocating for greater awareness of MS among black people, as there is limited information available in the UK and Europe through my NGO, ‘The Nerve of My Multiple Sclerosis’.

I was shocked to discover that even in Europe and the US, knowledge about MS in black communities is lacking. In Nigeria and Ghana, awareness is even lower, as I learnt during advocacy efforts there over the past few days.

My mission now is to ensure that black people everywhere learn more about multiple sclerosis so we can participate in research studies and clinical trials to understand how the disease affects us.

Currently, most MS medications have been tested predominantly on white patients, meaning their effectiveness in black individuals remains unclear. In my case, none of the available treatments worked.

This highlights a major problem: we are taking medications that have not been adequately tested on us. That is why I started my MS advocacy, to bridge this gap and ensure that black people have access to better research, treatments, and support.

What are the signs of multiple sclerosis?

The thing is, MS presents differently in different people. The typical signs—like I mentioned—include optic neuritis, which is often the first symptom. That’s when you lose vision in one eye, and that’s what happened to me. My neurologist was able to diagnose it quickly.

However, for some black people in my community in the UK, their symptoms were initially misdiagnosed. Some were told they were having a stroke because of the way MS presented itself in them. Others were diagnosed with lupus or other autoimmune diseases because in its early stages, MS can mimic these conditions. It often isn’t recognised until it becomes more progressive.

Symptoms can include cognitive issues such as forgetfulness and memory lapses. It’s not like dementia; it’s more like constantly misplacing your keys or suddenly forgetting what you were saying mid-conversation. That happens to me sometimes—I lose my train of thought and struggle to pick up where I left off.

MS can also cause slurred speech, making it seem as though someone is intoxicated. Balance and coordination issues are common as well. Some people may appear unsteady or wobbly, which is why I sometimes use a walking stick. Dizziness and vertigo, which can be chronic, are also symptoms. I’ve experienced vertigo twice, and it was awful.

Pain is another major symptom. It can affect the face, around the nose, mouth, and ears. Numbness is also common. Imagine the sensation of a blood pressure cuff tightening around your arm; that’s what intense numbness can feel like.

Pins and needles are harder to describe; it’s as if tiny needles are pricking you from the inside of your fingers. It’s a horrible feeling, and it can lead to a loss of grip. I’ve dropped plates before simply because I couldn’t feel them in my hands.

How many people are affected by multiple sclerosis?

The thing is, globally, it’s estimated that 2.9 million people have MS. That’s a significant number, but I believe the actual figure is much higher because accurate data for Africa is lacking. There hasn’t been much research into MS on the continent.

However, an organisation called Afritrims MS, which operates in different regions, has recently started expanding into Africa. They launched their efforts last year to better understand how MS affects Africans.

The first study estimated that 130,000 people in the UK had MS. The most recent one, conducted at the end of 2024, showed an increase to over 150,000. This rise is attributed to advancements in science and research, leading to better diagnoses.

However, I told them it’s crucial to capture ethnicity data in future studies. They agreed and plan to include it in their next report, which will be conducted in five years. At the moment, there is no widespread data on MS within black communities.

Even in the Caribbean, when I spoke with the Barbadian team, they admitted they lacked information. Usually, only the patient and their doctor are aware of the condition, and it’s not widely discussed within communities. This means the actual number of cases could be much higher than reported.

What advice would you give to the government, particularly in Nigeria, given that many medical personnel are not even aware of this disease?

I believe the government needs to take decisive action. When we visited Nigeria, we received support from the Lagos State Health commissioner, who permitted us to raise awareness within the community and strengthen the healthcare system’s capacity.

My plan upon returning is to engage with doctors I work with, including my neurologist and one of our ambassador neurologists, to facilitate knowledge-sharing. There are insights Nigerian and Ghanaian doctors can offer to their UK counterparts and vice versa.

Tell us a bit about yourself, what was your profession, and where were you based before?

I was a web developer in London and was doing quite well. I designed websites for banks, agencies, and other organisations. As I progressed in my career, earning promotions and advancing up the ladder, MS suddenly changed everything. I lost the ability to use my hands properly, being right-handed, I could no longer type. I had no idea what was happening to me, and it led to a deep depression.

What made it even worse was that I couldn’t find anything that reflected my experience. The leaflets I received from doctors all featured white people. A simple Google search showed the same—everything seemed to suggest that MS was a white person’s disease.

I genuinely believed I was the only black person in the world with MS, not realising that the condition affects people of all races, ages, and genders. That lack of representation deeply affected me.

Some people with MS recover enough to continue working, but for me, returning to full-time employment never felt like an option. I did part-time work for a while, but two years ago, I made the decision to dedicate myself entirely to my NGO. There was and still is so much work to be done, and I knew I had to focus all my energy on it.