Untold Stories Of Duchenne Muscular Dystrophy
Peter Mulowa is a boy aged 17. This boy has a condition known as Duchenne Muscular Dystrophy (DMD). DMD is a genetic disorder that weakens a person’s muscles over time.
Peter has difficulty standing. His posture is clearly poor. When he walks, Peter is almost tip-toing. This is Chibagala village in Blantrye, the village is in BCA Hills area.
He is in the early stages of Duchenne Muscular Dystrophy (DMD), according to experts.
And this, is Chibagala village in Blantyre. The village is in the BCA Hills area. On our visit this day, Zione, mother to Peter is busy pounding flour for the day’s meal. That speaks to the home’s ability to afford basics; food, shelter and clothing.
The mother has to pay K30,000.00 rentals every month for the two-bedroom house. Her only means of income is sales of tomatoes and onions. The husband in the home has no means of income
The Mulowa family has seven children, four of which are male and have the condition. One child died a year ago of the same disease condition, as recalls the father James Mulowa.
“He was not born with this condition, this disease started developing when he was about 10 years, one of children died in September last year at the age of 18. We lack a lot of necessities such as food as I am always supposed to look after the children. I bath them and take them where ever they want including visiting the toilet,” said Mulowa.
And yet, it is not only Peter they have to look after with the DMD condition. There is also Noel. He is 24. He too has Duchenne Muscular Dystrophy. He developed the condition when he was 12. At the time, he was in primary school.
Noel fell frequently. He had frequent muscle crumps. Noel has difficulty standing on his two feet. Now he even has speech problems.
“The disease started when I was in primary school. I used to fall a lot and stopped going to school. I feel that my future is shattered, I cannot do anything on my own now,” Noel recalls.
Duchenne Muscular Dystrophy is a multi-systemic condition, affecting many parts of the body, resulting in the deterioration of the skeletal, heart, and lung muscles. People with this condition gradually lose the ability to use their limbs.
In 2002, Malawi adopted the Integrated Disease Surveillance and Response strategy. The strategy was meant to help implement comprehensive public health surveillance and response systems.
Dr. Jonathan Ngoma is Chief Medical Specialist at Kamuzu Central Hospital in Lilongwe. Here he explains some factors in regard to this condition in Malawi at the moment.
Said Ngoma; “We need more specialists because you see how most of these cases are managed, how to make diagnosis even without diagnostic capability.”
Peter Mchilima is a physiotherapist. He works at Kachere Rehabilitation Centre in Blantyre.
The center is the only medical facility designed to provide intensive rehabilitation to people who have met disabling conditions such as Duchenne Muscular Dystrophy in Malawi.
Mchilima also asserts that, for some reason, the disease affects males more often than females.
“Muscular Dystrphy is more common in males or boys than girls. At the moment we don’t know why it is like that. We don’t have a special place or special people who have specialized in Muscular Dystrophy,” said Mchilima.
Chairperson of the Parliamentary Committee on Health, Dr. Mathews Ngwale, says financial constraints have led to poor health care for diseases such as Muscular Dystrophy in Malawi.
He says the committee is exploring options on how to improve the situation.
“Because of the limited resources of funds, government looks at the more critical cases first but diseases like Muscular Dystrophy are not given as much attention as they should, we are aware of what the situation is for government” he pointed out.
Health rights activist, Maziko Matemba, agrees that the disease is associated with socioeconomic constraints. This, he says, is due to high demand for healthcare and non-health care resources.
Matemba suggests a new approach to reaching out to communities mainly those with the condition.
“Government need to make sure that issues of health financing are also being given attention because if you have enough resources, some of these conditions can be delt with”
Despite its life-threatening nature, Duchenne Muscular Dystrophy has no cure. Physiotherapists only work on improving muscle and joint function. And physiotherapy is largely in urban areas.
The majority of public health facilities in these areas do not offer physiotherapy treatment.
Dorothy Chinguwo is deputy director in curative and medical rehabilitation services responsible for rehabilitation in the ministry of health.
“We have the services readily available for the population, the disease is generally very, very rare. Even in the development countries, they don’t have equipment to detect but you only diagnose the condition through the signs and symptoms presented,” Added Chinguwo
Duchenne Muscular Dystrophy has evident negative socio implications on affected families in Malawi. There are experiences of discrimination, rejection and socio-cultural mythical beliefs.
In some cases, marriages have broken up when children develop the incurable condition.
Hawa Williams is a mother of five children. She has had to move from Lilongwe city to a village in Nathenje because of her situation.
For Williams, at least hospitals should be able to detect the disease before childbirth.
“I would request government to find a way of detecting this disease before a child is born. This can reduce the burden that families have. I have been affected as I was forced to live alone since my husband left me because of the condition of my children,” said Williams
The United Nations (UN) General Assembly adopted a resolution in 2021 lobbying countries to recognize the need to promote and protect rights of persons Living with Rare Disease Worldwide.
These include those with Duchenne Muscular Dystrophy living in Malawi.
Provision of specialized care for such people may appear to be a tall order but the absence of the same is, therefore, a violation of that UN resolution.
Malawians living with Duchenne Muscular Dystrophy deserve, as a right, health care like do all.