- Shares battle with muscular dystrophy, seeks govts’ support
For the past 11 years, Abdlurosheed Kehinde Akewusola has not been unable to walk with his two legs. He has practically been depending on his aged mother for his day-to-day care and support.
Even when he admitted that his condition has been agonising, Akewusola hasn’t given up on life. He rather strives for the best in life and competes favourably with his peers in the academic world.
The 34-year-old graduate of Business Administration cannot walk because he is battling muscular dystrophy, one of the rare diseases on earth.
Medical experts define muscular dystrophies (MD) as a group of inherited genetic conditions that gradually cause the muscles to weaken, leading to an increasing level of disability.
MD is a progressive condition, which means it gets worse over time. It often begins by affecting a particular group of muscles, before affecting the muscles more widely. Some types of MD eventually affect the heart or the muscles used for breathing, at which point the condition becomes life-threatening.
While there is no cure for MD, there are treatments that can help to manage many of the symptoms.
MD is caused by changes (mutations) in the genes responsible for the structure and functioning of a person’s muscles. The mutations are often inherited from a person’s parents.
Some types of MD are Duchenne dystrophy, myotonic dystrophy, facioscapulohumeral MD, Becker MD, limb-girdle MD, oculopharyngeal MD and Emery-Dreifuss MD.
“I am a muscular dystrophy warrior, I studied Business Administration at the National Open University and finished in 2024,” Akewusola introduced himself to The Point correspondent in an exclusive interview recently.
Going down memory lane on how he discovered that he is a Becker dystrophy warrior, the soft-spoken Akewusola said, “My condition started showing when I was 11 years old. I was going to do my Common Entrance Examination then. One day, when I got to school, I vomited and became weak. So, I was taken to the hospital by one of my teachers and the doctor passed a drip through me and he said I will take four injections. When the nurse injected me, I screamed, “My leg, my leg”. When the nurse was pulling out the injection, blood came out and she said I should relax, that is I will be fine.
“So, I went home and took two more injections the following day. After taking the injection on the fourth day, I discovered I could no longer move my legs while trying to go home with my mother. My mother carried me home. After about a month, my mother discovered I was not walking properly again. Some days, my mother would beat me thinking I was doing guy with the way I was walking. So, that was how I found it very difficult lifting my legs. I was thinking that it was the injection I received that was the cause.”
He explained that aside from the painful injection he had of which he had thought was responsible for his predicament, Akewusola added that he suspected that the disease might be a spiritual attack since none of his family members had ever suffered muscular dystrophy.
“That is why awareness of this muscular dystrophy is very important. Most people are going through it but they don’t even know that it is muscular dystrophy,” he said.
Revealing that many medical doctors in Nigeria find it very difficult to detect muscular dystrophy, Akewusola disclosed that it took his doctors nothing less than seven years to fully find out that he is having muscular dystrophy.
“I was taken to the University of Ibadan Teaching Hospital and the doctor felt I was having a muscle infection. She did not say muscular dystrophy. She referred me to the physiotherapy department and I was placed on a drug called prednisolone. My condition was not improving and I was constantly falling down whenever I attempted to walk.
“I went to Lagelu Grammar School and I was in JSS 1. I used to fall frequently in school, on streets and on roads, but at that time, I could still struggle and get up by myself. There was a day that a teacher wanted to beat me and a family friend intervened and she said I needed to change my school to a private one that would understand my situation. She called my daddy and mummy and informed them. By this time, I wasn’t able to help myself again whenever I fell down. It was no longer easy and it became embarrassing for me to be falling down in public.
“I remember an instance like that when I came late to school and after standing for some time, we were asked to go to the assembly ground. Others were running but I was walking slowly because I did not want anyone to push me. So, immediately I joined the queue on the assembly ground, I fell. My colleagues carried me away and ever since, the proprietress banned me from coming to the assembly again.
“Then, I did not know I was having muscular dystrophy. I was even telling people that it was the injection the doctor gave me. Later, I finished secondary school 2008/2009 and we returned to the UCH and that was the first time I would hear a doctor say I have muscular dystrophy. But, the doctor was too harsh in the way he told my daddy that I was not going to be cured. That was very wrong of him. So, because of this, my father gave up on going to the hospital. He was in London at that time and had the opportunity of taking me abroad for treatment but because the doctor lacked empathy and told him bluntly that there was no cure, he gave up.
“Later, in 2014, I went back to the UCH and a doctor told me that my own muscular dystrophy is Becker Dystrophy and that it is not as severe as Duchenne Dystrophy. In 2016, I returned to the hospital in company of my mother and sister and we met a Professor who is a doctor. He explained muscular dystrophy and all the symptoms marched with what I used to experience because I was disturbed at what I was going through and I even thought it was a spiritual attack. What I am able to do today, I may not be able to do tomorrow. So, it was traumatic for me. The neurologist told me to continue living my life and hope in God that he can do all things. He said I should only be seeing physiotherapists.”
He called on the governments at all levels to support awareness and sensitisation of members of the public on muscular dystrophy and other rare diseases, lamenting that lack of facilities and medical equipment to manage the cases have led to loss of many lives.
“A doctor told me recently that Nigeria doesn’t have all the medical equipment to test people that show symptoms of muscular dystrophy to really confirm that they have it,” he hinted.
On how his mother has been his caregiver, Akewusola explained that since he stopped walking in 2014, “My mother has been doing everything for me. Even when I got admission to National Open University of Nigeria, it was my mother that would carry me into the cab and out of it, take me on my wheelchair and still push me inside school. It has been really stressful for her. She does everything for me, she bathes, feeds, and wears clothes for me. I am even thinking of getting a caregiver to assist her because she is not getting any younger. There would be a time she may not be able to carry me again.”
Expressing concern that his mother is already ageing, Akewusola appealed to the government and kind spirited Nigerians to assist him and others in the same situation in getting caregivers.
“The government should intervene and make life easier for us with disabilities. Like ensuring that schools, banks, hospitals and other public places are accessible and easy for us to go in and out. Another problem confronting people with disabilities is that some of them who are educated don’t have jobs. We are losing people with muscular dystrophy every day because there is no medical equipment to detect the ailment early and there are no facilities to manage it because it is progressing and there will be a time it will start affecting the heart.”
When asked about his relationship life, he said, “You know it is very difficult to see a lady in Nigeria who will want to truly love and marry someone who will be a dependant. I am not afraid to settle down but I haven’t seen any lady who wants to truly love me. Women forget that marriage is about companionship.”
