Multiple Sclerosis, the unknown condition that leaves destruction in its wake
There are hundreds of patients, like Lucia Ndolo, who are secretly suffering from a unique medical condition known as Multiple Sclerosis.
This is because for a long time Multiple Sclerosis often just referred to as MS, has been considered as a ‘white man’s disease’ because it had not been witnessed by most health care providers in the country.
Ndolo’s health was normal until she was in Form Two when the condition was diagnosed. Since then she has been in and out of hospital. Although she went through high school and college education, Ndolo landed a good job in the Ministry of Agriculture. However, her joy was shortlived as her health deteriorated and she was forced to use a wheelchair.
Ndola’s story is quite sad as she was born normal and seemed to have a bright future as she played with her siblings and schoolmates and excelled in her studies.
While in Form One, in 1975 her world caved in when her hands suddenly stopped writing. She tried severally but failed, was shocked and reported to a teacher.
She was then taken to Kenyatta National Referral Hospital in Nairobi where she was admitted for two months as they tried to diagnose what was ailing her.
“My classmates and teachers used to visit me regularly. After several tests I was prescribed for some drugs which made me sweat a lot. I still use them up to now and they still have the same side effects,” she recalls.
While in hospital, Ndolo experienced numbness on most of her body. She couldn’t hold anything and her hand became paralysed.
That is when she was diagnosed with Multiple Sclerosis. She recovered and was discharged with a big bag full of drugs.
She later resumed her classes and life as usual, but had a relapse the following year. She was then given the same drugs which after taking made her body puff up.
Ndolo soldiered on and passed her exams and completed Form 6 without any major problems. She went to college for three years and it was still ok. However, when she was in her second year of employment with the Ministry of Agriculture the same symptoms resurfaced.
Ndolo has had several relapses since then as she faced many challenges with the disease.
“I used to fall a lot while working in Machakos town. One day I fell at a certain corner on my way to work. I got up, shook up the dust and got into a certain saloon that I used to patronize,” she recalls, adding that nobody cared to pick her up instead some dismissed her as a drunkard, yet she has always been a teetotaller.
While doing her Master’s Degree, Ndolo relapsed. She had been fine for ten years and that is when she went back to see her neurologists Prof Paul Kioy.
The doctor was pleased and also surprised to see her after a long absence. After several visits they discussed the possibility of having a support group formed and that is how MS Kenya was started.
Since then, she has been forced to use a wheelchair as she leads people living with MS in sensitizing the public about the condition and how to deal directly and indirectly with the medical condition
But despite all that, Ndolo can afford a smile and encourage her colleagues and their relatives to soldier on. She has a loving family and a daughter who loves and supports her.
According to National Multiple Sclerosis Society, MS involves an immune-mediated process in which an abnormal response of the body’s immune system is directed against the central nervous system (CNS), which is made up of the brain, spinal cord and optic nerves.
The exact antigen — or target that the immune cells are sensitised to attack — remains unknown, which is why MS is considered by many experts to be “immune-mediated” rather than “auto-immune”.
So far there are no official records about the number of MS patients on Kenya, but Kioy estimates that they are approximately 2.5 million MS patients in the world. Speaking to the Reject, while attending a roundtable discussion on the management of Multiple Sclerosis in Kenya, Kioy said that they were facing many challenges in the treatment of MS.
“The symptoms are confusing in the beginning. They are attributed to numbness of the hand, which could mean something different. People attribute early symptoms to other things before they realise that it is MS. You also need to have an MRI scan to diagnose it.”
Another challenge is the availability of the machine and the high cost of a scan.
“The MRI scans are scarce and not affordable to common people unless you have a health insurance. They are also not easily accessible,” says Kioy. “We have 20 MRI scans in the district hospitals. We also have around ten or eleven in Nairobi. An MRI scan costs a minimum of KSh15,000.”
Most MS medicine is imported and very expensive.
And for patients who slur, there is the additional cost of speech therapy drugs, physical therapy for their movement and regular MRIs, which cost between KSh45,000 and KSh70,000.
The treatment, however, does not end there. The patient needs to be monitored every month to document the effects of the drug. Some patients also need to be monitored for opportunistic diseases that they may develop.
There are also treatments for memory loss since patients in the advanced stage of MS experience brain atrophy, which means their brain shrinks.
“There are cases of misdiagnosis where some patients were treated for other diseases and by the time MS was diagnosed, it was at an advanced stage,” says Kioy.
Another challenge is that people associate MS with witchcraft.
“Since most Kenyans are ignorant of the disease and they also cannot access treatment, they just decide that the patient was bewitched,” says Kioy.
However, Kioy says there is hope. “We are trying to see how we can reduce the cost of the treatment because those costs include the taxes which the government can waive in order to benefit the patients.”
Currently MS has no cure but neurologists are trying to achieve No Evidence of Disease activities (NEDA).
According to Kioy, cases of MS have increased over the last 30 years and he receives an average of two patients every month. He suggests that the neurology post-graduate course should be established at the University of Nairobi. This will help increase the number of neurologists above the current 15 specialists who serve between 10 to 15 patients every month.