When most people hear the word “multiple sclerosis” they have one of these two reactions, “The disease is horrific, disabling, and basically a death sentence”, or ignorantly ask, “What’s the big deal? Isn’t that just some minor little thing?”
There are two extremes of those who know about multiple sclerosis and those who don’t.
According to the National Multiple Sclerosis Society, more than 2.8 million people are living with Multiple sclerosis (MS) worldwide.
While in Kenya there is no data on how many suffer from MS, the MS Association has 150 people in its database, owing to a lack of awareness of the disease and the organisation.
Research shows that MS is increasing disproportionally in women, likely due to changes in environmental risk factors. Multiple studies show that women are disproportionately affected with women getting the disorder nearly four times more than men. A study on People with Multiple Sceloris at Aga Khan University between 2008 and 2018 revealed a male to female ratio of one to four. The mean age of MS onset was 30.7 years.
This is attributed to many changes in women’s lifestyles in recent decades; such as first pregnancies occurring later in life, an increased use of hormonal contraception, a lower rate of childbirth, and higher rates of employment and smoking.
MS, a chronic disease affecting the central nervous system (the brain and spinal cord) is an insidious disease in that it proceeds in a gradual and subtle way and gradually causes serious disability. It could start with a tingling sensation in some parts of your body or being unable to lift your leg to walk.
Even though it is not a new condition, it is one that scientists are still trying to understand. According to various researchers, they don’t know with certainty what causes the disease or how to stop it.
Why? Is it genetics? Is it hormones or some other aspect of being female?
“Most autoimmune diseases are more common in women than men. There are multiple kinds of research that attribute to the hormonal differences but it is not conclusive,” says Dr Kinoti Ndege, a Nairobi-based neurologist.
People living with multiple sclerosis and their families may find that the physical, emotional, cognitive, psychological, and spiritual challenges of living with the disease can be overwhelming. This is especially so in Kenya, where many are not aware of the condition, and accessing experts and the right healthcare is a major challenge.
Last week, May 30th, the World MS Day was officially marked to raise awareness and campaign with those affected.
We speak to three women who share their experiences dealing with Multiple Sclerosis.
Patricia Mwangi, Remitting Relapsing MS
“My journey with MS started about 13 years ago. I was about 32 years old when I woke up one morning and I could not use my right hand.
It was numb but not painful. I was also feeling fatigued and I just wanted to sleep. I rested day and night for about a week until my brother realised this sudden pattern.
He took me to the hospital and the moment I told the nurse about the numbness, her facial expression changed suddenly. She stood up and asked that we go see an orthopedic who referred me to a neurologist.
After an MRI test and a series of treatments, he suggested that I see yet another neurologist who after listening to my explanation and reading my medical report wrote “possible cause of MS”.
A second MRI test showed lesions on my brain and I was diagnosed with Remitting Relapsing Multiple Sclerosis (RRMS). It took close to three years to get this correct diagnosis. With RRMS my symptoms might show up and disappear after a while. Sometimes I will stagger and other times I would walk well which makes people think I am pretending. I experience episodic symptoms such as numbness, extreme fatigue, severe pain, and memory loss.
Living with MS brought a significant change in the way I live my life. A simple task such as going to town involves a lot of planning. I think about what to wear carefully, the route I will use and I may even carry painkillers. Sometimes I forget obvious things like how to cross the road or my personal information. Over the years I’ve learned to listen to my body and obey. If I’m out on the streets and I get dizzy or tired I will sit down. I’ve gotten used to the stares. I’ve also adjusted my diet and I do not take wheat or plant-based proteins.
Patricia Mwangi, an entrepreneur has been managing Remitting Relapsing Multiple Sclerosis for the last 13 years.
One of the biggest challenges with MS is that many physicians do not understand the condition. I’ve heard incidences where physicians say “we read about it in school” but have no idea how to deal with the condition. Then there is the cost of treatment. I’m currently on Relibeta weekly injections which cost Sh12, 000 a dose. Thankfully, I get a lot of support from my siblings. They chip in when the medication costs are high. I also have friends who check up on me regularly. My daughter is quite understanding and sometimes she helps explain my condition to people.
Being diagnosed with MS can be confusing and heart-wrenching but to anyone who is going through this-do not allow it to define you. You are stronger.”
Zipporah Kerubo Kerandi, 45, a lab technologist and director famlink laboratory
“If you meet me in person, you wouldn’t even guess that I live with a chronic disease unless I told you about it. On one hand, I am able to lead a life like any other person but on the other hand, some people, including close relatives think that I feign sickness. I don’t know how many times I have heard, “but you don’t look sick.”
My journey with MS started in 2012. It started with trigeminal neuralgia (sudden, severe facial pain) on the right side of my face. I would dismiss it as toothache until it got too bad that I couldn’t smile, was struggling to eat, and felt a tingling when people touched me.
I was in a season where my husband was on and off work and I had a cruel house help who made my life and that of my children a living hell.
In 2018, five years after positing symptoms to the anxiety of being the breadwinner and chalking them up to being psychosomatic, I was diagnosed with MS.
Even though I am in the medical field, I didn’t know what MS was when the neurologist informed me. As such, I just sat there, apathetic. I didn’t know if it were a grave condition or not. For a moment, I thought I had invisible scales. I have relapsing-remitting multiple sclerosis.
One of the things that I learned about MS is that I had to make my health a priority. Even on a sunny day, I have to wear many clothes to keep myself warm. I would rather deal with sweating. Further, stress can contribute to relapses so I do a lot of singing and shopping to distract myself from the happenings around me—business is bad and I have dependents looking up to me.
I try to make my life as normal as possible. I run a lab clinic in Nairobi and show up to work whenever I can. But there are still days I wake up with no energy. On those days, I try to keep the ball rolling with as little effort as possible. I have not told my staff or my children that I have a chronic illness. But, they know. I have heard them tell their peers in the church to pray for me because I am sick.
The last time it happened, before an episode I had this week, I lost my vision and was not able to walk. I went to see a doctor and I remember being attended to by a nurse who thought that I was joking when I said that I couldn’t walk. This tells you that not many people are aware of the disease. Since it can only be managed, I go for MRI tests at least three times a year and it is always a dreadful experience. I am also trying to cut weight at the instruction of my doctor owing to the fact that I also have high blood pressure. I have only one meal a day and spend at least Sh3, 000 every day on medication. For MS patients, seeking treatment is an expensive affair that drains us mentally and financially.
Since I was diagnosed with MS, it has made my life quite unpredictable. I don’t know what to expect from my body. I have to deal with incontinence, memory loss, and lack of sexual urges. My doctor asks me about my sex life and I just keep quiet. I don’t know if there’s a medicine for that.
With MS, there are fears of relapses and question marks around the disease now that there’s no scientific conclusion around it.
To find comfort, I have joined a support group for people living with MS and I also founded one for Trigeminal neuralgia where we support one another.”
Robai Musilivi Muiruri- Caregiver, Co-Founder, Interim Chair of MS Association Kenya
“When I met my husband Martin Muiruri in 2004, I had just been crowned Miss University International. Two years prior to our first date, he was diagnosed with Secondary Progressive Multiple Sclerosis. He did his best to explain the condition to me and I later went to a cyber cafe to research. I had never heard of MS before meeting him, but I learned that it was a progressive condition, with symptoms such as walking difficulties, balance problems, memory lapses, poor coordination, electric shock sensations, slurred speech, and sometimes severe pain would progress and worsen over time. For instance, when I met him, he had a slight stagger in his walking style, but after a while, he started using a walking stick, and now, he uses a tri-walking cane.
When we got married in 2008, I took up the role of a caregiver, which entails making his life comfortable. For instance, if he needs to use a toilet, and we are at a place where there is no bathroom, I have to find a way-because MS causes incontinence. I keep his medical records, know the medications he is using and track his dosage because he may experience memory lapses sometimes. I also play the role of a therapist and a nurse. One of our darkest moments was when he experienced trigeminal neuralgia- an extreme type of nerve pain, but I kept encouraging him.
Being a caregiver is not easy. Initially, everyone kept asking how Martin is doing until one day a friend asked how I was doing and I broke down. I realised that I was keeping everything in. I thought I was not supposed to cry, complain or say anything.
We have three adoptive children who are 12, five, and two years old. I have learned to juggle motherhood, my profession as a crafts teacher, with caregiving duties. Our children are inquisitive and they understand the condition. Our eldest child assists a lot with house chores and cares for her siblings.
We also have a good support system. I have a therapist friend whom I talk to a lot and we have friends who notice when things are tough and help.
Being part of the MS Kenya Association has helped us navigate everyday challenges. I co-founded the association in 2015 with other members and I am the current Interim Chairperson. Knowing that we are not the only ones going through this experience is empowering. Initially, we had to read about MS online but hearing real experiences and sharing daily struggles with members is reassuring.
When we started out, I counseled many newly diagnosed members during monthly meetings, home visits, or phone calls. I remember talking to people who were suicidal, not knowing where to start and today these people are still forging on. Over the years we’ve also tried to lobby for support from different government agencies. We’ve seen some progress, especially with access to medication but MS is still one of the most expensive conditions to manage—modifying drugs, physiotherapy, diet, and medical emergencies. It’s baffling to think that one of the drugs used by MS patients is covered by NHIF as a cancer drug but MS patients do not benefit from the coverage.
Despite the challenges, my 18 years with Muriithi have been great. I try to remember why we got married when things get tough. He is fun, responsible, and supportive with a sense of humour. He plays his role as a husband and a father despite his condition. When I am tired, he understands and lets me rest. Every day, I remind myself that he is my friend and if the tables were turned, he would take care of me unconditionally.”
What to know about MS
Relapsing/remitting (RRMS): The most common type of MS, RRMS, is characterised by symptoms that spontaneously disappear (remit) or recur (relapse). Symptoms may shift over time, striking different areas of the body with variable severity.
Primary progressive (PPMS): PPMS is typically a more severe form of the disease characterised by progressive symptoms without any periods of recovery or remissions. Some forms of PPMS are more progressive and damaging than others.
Secondary progressive (SPMS): SPMS follows RRMS, as the disease progresses and neurologic function gets worse over time. Some people with SPMS experience relapses and show new evidence of disease on imaging tests. But not everyone with RRMS will develop SPMS.
Common Symptoms
· Fatigue
· Vision problems
· Numbness and tingling
· Muscle spasms, stiffness and weakness
· mobility problems
· Pain
· Problems with thinking, learning and planning
· Depression and anxiety
· Sexual problems
· Bladder and bowel problems
· Speech and swallowing difficulties BY DAILY NATION