Multiple Sclerosis, foreign but a reality in Namibia
At 22 years of age, MS Namibia founder, Bianca Ozcan, was diagnosed with Multiple Sclerosis (MS).
MS is an incurable condition that causes the weakening of the myelin sheath - the protective covering of the nerve cells in the brain and spinal cord.
The covering of myelin sheath, which enables messages to be passed from the central nervous system (CNS) to other parts of the body, when affected, leads to MS.
The weakening of the myelin sheath hardens various parts of the nervous system or the development of scars or lacerations on the spinal nerve distribution.
An MS diagnosis is very difficult because a person has to present at least two neurological problems before being referred to a neurologist.
Windhoek-based neurologist, Dr Vaja Zatjirua, says the diagnosis depends on neurological complaints a patient presents to a general practitioner who will consequently refer the patient to a specialist to conduct a lumber puncture. This is a process in which a needle is inserted into the back of the head to extract fluids surrounding the brain and spinal cord to identify specific types of proteins that may indicate MS.
In Ozcan’s case, she had just given birth so she thought that, perhaps, these were post-natal symptoms which would soon end but to her dismay, it only got worse.
“I lost my equilibrium. Not only was I losing my eyesight but I also had episodes of depression. I was not in the mood to do anything. I also felt very anxious and irritable. I would always shout at everyone. I also grew weak because I hardly ate,” Ozcan relates.
Confused and unaware of what was happening to her, Ozcan endured this ordeal until she was referred to a specialist who conducted a proper diagnosis.
While the exact cause of MS is unknown, Dr Zatjirua says it is common in European countries due to the cold weather conditions.
“MS is not very common in Namibia. It is also quite uncommon on the African continent apart from South Africa and North Africa where we have seen many cases. This is because of geographical distribution. I have noticed that all my patients, so far except for one, are of European ancestry,” he says.
According to his records, there are about 20 people in the country who suffer from this condition in a population of just above two million.
Looking at Ozcan, one would not imagine she suffers from this condition, because she looks perfectly normal.
However, there are different stages to MS and she is still in the initial stage.
According to MS Namibia, the second stage of MS is also the most common phase referred to as the ‘relapsing/remitting phase’.
It is characterised by occasional attacks known as ‘relapses’ or ‘exacerbations’ of any of the symptoms such as optic neuritis, muscle spasticity or speech problems.
The last stage is called the ‘progressive stage’, which comprises the primary and secondary symptoms.
In the primary/progressive stage, there is a slow but steady onset of symptoms such as difficulty in walking that can lead to disability.
In the same stage, the disease progresses somewhat faster with less time in between relapses, thus the level of recovery is less complete.
Disability soon sets in due to continued damage from lesions.
According to Dr Zatjirua, life expectancy varies depending on the person, their activities and the care they receive.
People end up becoming disabled between 10 and 15 years of age but there are certain ways to ensure longevity.
Early rehabilitation is best, Dr Zatjirua urges. So a multi-disciplinary approach is recommended.
The patient has to see different specialists to help them cope. Neurologists help the patient to manage their medical condition and help them deal with stiffness.
“A physiotherapist will help the patient with mobilisation; an occupational therapist will help the patient to adapt to their disability so that they do not get frustrated; and a speech therapist will help with speech and swallowing recovery,” he explains.
The case of South African former Springbok rugby player, Joost van der Westhuizen, is proof that a person can indeed live longer with MS.
However, with proper medication and regular strength training and protein supplements to delay muscular weakening, he has been able to maintain some functionality.
The Namibia government has, thus far, contributed to this cause. This year alone, it donated about N$148 000 to MS Namibia to help support and care for patients by buying wheelchairs and medication.
Ozcan says while Namibians try their best to understand this condition, those living with the condition complain about close relatives who do not understand them.
“Relatives are completely withdrawn. They do not know how to handle MS patients. People are just dropped off at a care home and then relatives forget about them,” Ozcan says.
Dr Zatjirua, however, explains that the psychological impact on the family of and the MS patients, presents a degree of fear they do not know how to deal with.
Most patients dread the idea of ending up in a wheelchair sooner or later.
Caring for an MS patient can be very challenging depending on how severe the condition is.
“The level of care depends on the level of disability. In the most severe level, the person cannot do anything for themselves, so they will need someone to bathe, feed and take them to the toilet,” Dr Zatjirua explains, adding, lung and bladder infections - which generally occur if a patient does not have adequate care - are what often lead to the death of MS sufferers.
Since mobility is very difficult for those with severe cases, Dr Zatjirua advises those taking care of MS patients to ensure that they constantly move, lest they end up with complications of (for example) muscle shortening and chronic bed sores. PF