Multiple Sclerosis (MS) in Uganda

Multiple sclerosis (MS) is a disease where the nerve fibers in the brain and spinal cord lose the fatty covering, they become demyelinated.  This process is like removing the insulating covers from copper wires. The damaged nerves do not function correctly and nerve impulses pass along them very slowly. There is a range of symptoms, (see Wikipedia), most commonly:

• Vision problems like double vision or blindness in one eye
• Muscle weakness or fatigue of muscles
• Trouble sensation most commonly tingling or numbness
• Trouble coordinating muscles

MS occurs in 2 types:

1. Relapsing and remitting, where the symptoms come in isolated attacks. The symptoms may permanently disappear after an attack, but often there is permanent damage.
2. Progressive, where there is a steady diminution of faculties.

The mechanism of MS is not clear.

Assessing the number of people in Uganda with MS is difficult. This 1994 paper, Multiple sclerosis in black South Africans and Zimbabweans, confidently states:

Multiple sclerosis is rare among the indigenous black people of Africa. The first account of a black patient with multiple sclerosis in South Africa was published as late as 1987. Since then a search to find black patients with multiple sclerosis in Southern Africa has continued. Seven black patients have now been traced in South Africa and five in Zimbabwe in whom a diagnosis of multiple sclerosis can be accepted. Six of the 12 patients became blind, or nearly so, from severe optic neuritis. Multiple sclerosis in these few black patients more often resembled the disorder as it occurs in oriental people than among white people in southern Africa or the black people of North America or the Caribbean

This was reported in a 1980 report Multiple sclerosis in Mulago Hospital, Uganda:

Ten patients, 4 male and 6 female Ugandan Africans, who have been diagnosed clinically as suffering from multiple sclerosis (MS) are presented. These patients were seen over a ten-year period, five of them over the last year. It is pointed out that the disease may not be as rare as the literature seems to indicate. A higher index of suspicion and more clinical vigilance might reveal more cases. The clinical pattern of MS in Uganda seems to be similar to the disease as seen elswhere.

Again this 2001 report Emerging picture of Multiple Sclerosis in Kenya is one of the few reports found discussing MS. It has the following to say in its conclusions:

MS occurs amongst Bantu Africans and may not be as rare as previously suggested and its prevalence is certainly on the increase. The development of higher incidence rates where the illness has been previously unknown may present opportunities for the satisfy of etiological factors as it emerges. There is a need therefore for proper epidemiological studies to evaluate  these factors, especially environmental factors, as the new disease continues to appear.

Further, I was interested to find this statement from the Martin MS Alliance Foundation about racial discrimination in the USA:

M.S. IN COMMUNITIES OF COLOR: “Who are the People with Multiple Sclerosis?”: “We are your parents, your children, your brothers and sisters; we are the person down the street; we are that lady or fellow who may walk a little "funny" at the grocery store. - We are the face of Multiple Sclerosis. A face that is nearly every ethnicity; that comes from nearly every country, (M.S.) does not discriminate by social standing or class or financial or educational background or language or religion. -We are brave. We are fragile. We want to live, and we want to end it all. We look for support and we want to stand alone. We are every person. We are the People with Multiple Sclerosis. We are People, Just Like You....” - Virginia Sanchez
o Why This is Important:
AMA Apologizes to Black Doctors for Past RacismJuly 11th, 2008 • By LINDSEY TANNER AP Medical Writer
Transplant surgeon Clive Calendar has hurtful memories of being the only black doctor at medical meetings in the 1970s, met with stark silence when he pleaded for better access to transplant organs for blacks. So when the American Medical Association formally apologized Thursday for more than a century of policies [...]

• What do we know about M.S. in Africans, Asians, Hispanics, African-Americans - very little
• How many people of color have M.S.?
• How many people of color are diagnosed with M.S. each year? 
• How many studies have been done on M.S. in communities of color? 
• How many African-Americans, Hispanics, Native Americans, People of Asian, Pacifica Islander, decent etc… have M.S. and does their genetic heritage create a difference in the way the disease manifests itself, in the ways the medication works.

These are just some of the questions the Martin M.S. Alliance Foundation is working to answer as a main stay of our mission.

This article from The National MS Society, African American Resources makes the following comments:

African Americans and multiple sclerosis: The myth that African Americans do not get MS is just that — a myth. African Americans do get MS. In fact, studies suggest that MS can be especially active. African Americans:

• are more likely to experience more relapses
• are more likely to experience greater disability
• have a greater risk of progressing to require ambulatory assistance earlier
• are more likely to develop involvement of the optic nerves and spinal cord (optic — spinal MS) and inflammation of the spinal cord (transverse myelitis).

The report COMPARISONS OF LATINOS, AFRICAN AMERICANS, AND CAUCASIANS WITH MULTIPLE SCLEROSIS shows that the disease varies differently across different racial groups,  the average time from first symptoms to diagnosis is around 6 years.

World Health Rankings on the other hand ranks Uganda 65th in the world for MS with a death rate of 0.28 deaths per 100,000 people. This gives no hint of the numbers of persons with the diagnosis of MS in Uganda.

This article from the Daily Nation in Kenya talks about the problems of Living with MS:

Martin Muiruri recalls with pride the day he climbed 20 flights of stairs to see his girlfriend, Robai, at her workplace. That remains the ultimate labour of his love for Robai, now his wife and the mother of their five-year-old daughter.
So what? Men have done much more spectacular things for love, you might say, but for Martin, who suffers from progressive multiple sclerosis, the chances hurting himself on his way to see the love of his life were extremely high.
Multiple sclerosis, or simply MS, is a rare autoimmune disease that causes the body’s own defences to destroy neurons in the brain and spinal cord.
MS is debilitating because it affects the nerves. When you suffer from MS, the body destroys myelin, the fatty insulating material that covers the nerve fibres that form part of the nervous system, which controls all bodily functions.
Demyelinated nerves cannot transmit impulses to the brain or spinal cord and from either to the muscles in the body. Consequently MS patients sometimes have difficulty with simple things like swallowing food, blinking, controlling their bladder or limbs, or focusing their eyes on an object.
The disease begins with what is known in neurology as the relapsing-remitting phase, during which patients oscillate between periods of stability and getting worse. As the disease progresses, they gradually lose control of all their muscles and have to depend on others.
When the disease reaches the progressive stage, as in Muiruri’s case, there is no cure.
SAME BOAT: So it is surprising that, although Muiruri and Robai know that the future is bleak, they burst into hearty laughter along with their friends as they make fun of the embarrassing situations that MS has put them through.
“One day the driver of a public service vehicle refused to stop for him to urinate” Robai recalls.
“The man didn’t understand that I had guests from abroad in the vehicle and that that was not the time for me to embarrass myself in front of them and my daughter,” Martin continues.
The others in the meeting in a house in Buruburu, who are members of the Multiple Sclerosis Association of Kenya (MSAK), laugh because they are in the same boat.
For instance, Dennis “the menace” Gitonga is in the relapsing-remitting phase, which makes his limbs weak, causes him fatigue and and leads to spasticity.
His jocular reference to “spasticity” belies the experience: when undergoing spasicity, his muscles tighten or he experiences spasms during which he cannot control the movement of his legs.
It is such issues that stopped him from playing rugby and drastically affected his working life.
Martin first realised that something was wrong when he had trouble lifting his leg as he tried to climb a stair.
When he sought medical attention in 2010, the doctor ordered a magnetic resonance imaging (MRI) test, which revealed patches on his brain that suggested demyelination, a common symptom of MS.
Ironically, notes Martin, he had always been a hardworking person who ate right, exercised, and followed all the rules of healthy living.
The MSAK provides a useful forum where they exchange notes on their experiences, but today a few of them are meeting to share experiences.
Their discussions are punctuated with appreciation of the little things that they once took for granted.
Kamau Kimani, the association’s chairman, has lived with MS since 2006.
“Nowadays I have to think hard while planning my daily movements because I have to know where the lifts and the toilets are situated in the building I am going to,” he says.
Kimani would love to play football with his two teenage daughters and carry them when they run into his arms like he used to but he can’t.
“We used to go swimming but I stopped because I feared that we might drown … sometimes I know that they want to play, but what do I do?” he wonders.
Like Dennis and Martin, Kamau also uses a walking stick.
When he falls down, he says, he stays down for a while as he figures out how to get up because it can be quite a process.
Lucia Ndolo, who has lived with the condition since 1975, also had trouble getting up after a fall, until her physiotherapist came up with a sequence that works for her.
MULTIPLE CHALLENGES: “He taught me to roll onto my side, lie on my tummy, then get on my knees before getting onto my feet,” she explains.
Lucia, a master’s degree holder working in the Ministry of Agriculture, has to use a wheelchair, which she finds greatly distressing. She has always been a fiercely independent woman, so depending on others has been most humbling.
“There are days that I am so low that I have to rely on someone’s kindness for everything, from being dressed to… it breaks my heart,” she trails off.
Martin avoids taking fluids when he is travelling because when he gets the urge to relieve himself, he cannot not hold it back for more than a minute.
“It is difficult to relieve yourself wherever you feel the urge since every human being wants to maintain their dignity,” he says.
As if the helplessness that robs MS patients of their dignity is not enough, they have to deal with public ignorance. For instance, thanks to the way Lucia walks, people sometimes think she’s drunk.
“One day a man on the street asked me whether he could get me another bottle of beer,” she says.
Just like the name of the disease, there are multiple challenges that come with managing and living with MS. Besides, it is a frustrating disease for doctors too because it progresses unpredictably in different patients, making it difficult to assess the effectiveness of a particular line treatment.
Although official figures for the number of sufferers are not available locally, neurologist Dr Juzar Hooker estimates them to be in the hundreds of thousands, adding that his heart goes out to them.
“There are cases misdiagnosis, in which patients are treated for other diseases such that, by the time MS is diagnosed, it is at an advanced stage,” he says. In addition, some patients are considered bewitched or taken to herbalists. Then there patients who know they have MS but cannot afford treatment.
Dr Hooker says the cost of basic drugs for managing the condition is prohibitive.
For instance, a monthly dose of interferons — drugs that modulate the response of the immune system to viruses, bacteria, cancer and any other foreign substances that invade the body — costs up to Sh100,000.
Meanwhile, drugs that prevent flare-ups cost anything from Sh 245,000 to Sh350,000 a month. Sometimes he has to import drugs, whose costs are borne by the patient.
And for patients who slur, there is the additional cost of speech therapy drugs and regular MRIs, which cost between Sh45,000 and Sh70,000.
There are also treatments for memory loss since patients in the advanced stage of MS experience brain atrophy, which means their brains shrink.
HEALER OF MANY DISEASES: A study published in The Lancet last year suggested that statins — drugs that reduce cholesterol in the body — reduce annual brain atrophy by 0.3 per cent from the normal 0.6 per cent loss in MS patients.
In a month, a patient can spend between Sh 400,000 and S 1 million, yet many insurance companies do not have cover for the disease.
Other expenses include travelling by taxi so that they can ask the driver to stop if they need to, say, go to the toilet.
MS patients are also acutely aware of the quackery that comes in the form of herbalists, magic beverages and prayer.
Lucia tells of a friend who introduced her to a man who had healed “many diseases”.
“When the man said he injects any part of the body and the patient gets well, I said no thank you,” she says.
Then there are other treatments such as bee-sting therapy and aloe infusions, whose efficacy has been questioned.
In 2009, an Italian scientist, Paolo Zamboni, hypothesized that the real cause of MS was something called chronic cerebrospinal venous insufficiency, or CCSVI. MS patients received CCSVI as exciting news of a medical breakthrough.
Zamboni’s study purported to find CCSVI in 100 per cent of MS patients, and he suggested a surgical procedure called angioplasty to treat it: it entailed opening the veins that carry blood away from the head with the aim of restoring normal blood flow.
He posited that compromised blood flow in the veins draining the central nervous system leads to iron deposits around the pulmonary veins, which triggers autoimmunity and the degeneration of myelin.
Dr Hooker understands that the desire to live would drive patients to seek treatment from anywhere, even against his advice.
Even though some of his patients do not like what he tells them, he consistently reminds them that no one knows what causes MS, how it will progress in each patient, and that there is no cure at the moment, so it can only be managed.
He also understands that patients without a scientific background often view any news of a breakthrough as important, when in some cases, there is nothing new.
“I advise them to stick to well-known treatment, even when there is a scientific basis it may be a very weak one”, he says.
Dr Hooker wishes the government would give as much attention to autoimmune illnesses as it has HIV and maternal health.
“Perhaps just bear a little part of the cost of drugs for patients, or fund more research,” he says.

In summary, the suggestion that MS is rare amongst Africans has lead to ignorance about MS in Africa and Uganda. Contradictory studies of the numbers of people have fueled the debate. Despite this ignorance there are figures emerging that hint at the numbers of people in Uganda that may have MS. Combine to this the fact that it takes a long time to diagnose MS, on average 6 years in the USA, and it is difficult to assess the true impact of MS on people in Uganda. Finally, the relapsing and remitting nature of MS makes it ripe for miracle cures. Add to this the stigma and prejudice of MS and an already vulnerable group is multiply disadvantaged. 

For more information on MS see the MS Kenya website or Multiple Sclerosis Association of Kenya - MS Kenya on facebook,, or Multiple Sclerosis South Africa on Facebook.