Rare disease robs patients of their mobility and self-worth

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.

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POTRAIT OF STRENGTH

Multiple Sclerosis patient who inspired this article didn’t live to tell her story 

When Susan Kemei was diagnosed with multiple sclerosis in September last year, she contacted the Nation so that she could tell her story.

Remarkably, she had a special request which she communicated in a Facebook message that said: “The bills are killing me and my sister and its delaying my valid dream of going to the Bahamas. I wouldn’t like anyone to read that part of this struggle. I just want people to know about this disease. Maybe they would be prepared for it should the doctor announce to them unceremoniously that they have the disease.”

The interview was scheduled for January 14, but that very day Susan was rushed to the Nairobi Hospital. She was later moved to the ICU, where she spent her last days surrounded by family and friends.

Even during her sickness, Susan was polite enough to text DN2 that she would not be available for the interview.”

On February 3, Susan lost the battle to multiple sclerosis.  She was 25.

Susan’s high school and university classmates — Bahati Girls alumni of 2006 and Kenyatta University’s 2012 telecommunications and information technology class — gathered in Kabarnet in Baringo County for her funeral on February 14.

“Susan would be terribly upset if she were to wake up and find people sad at her funeral because she was a person who lived every day as if it were her last,” her older sister, Bilha, told DN2.

She said Susan had had some trying times, but had been cheerful all through.

During Susan’s illness, her classmates took turns visiting her, and these visits turned out to be social gatherings whose outcomes would be pictures posted on the social media.

A WhatsApp page created and managed by Sarah Anne Kiburu, who was her head girl in high school, was the avenue through which the young women planned fund-raisers and visits to alleviate Susan’s medical and social troubles.

Hearing about the disease for the first time and being overwhelmed by its severity, her friends wore branded T-shirts at her memorial service, hoping to enlighten the public about the disease.

Challenges of MS

•  Patients lose muscular control due to damaged nerves

•  Some suffer depression as a result of losing their independence

•  Others suffer memory loss due to shrinking brains.

•  High cost of treatment, which can be as much as Sh1 million a month.

•  Unpredictable progression of the disease.

•   Ill treatment by those who do not know about the disease

•  Exploitation by quacks, who claim they can cure the disease.