Living with muscular dystrophy in Nigeria

Living with Muscular Dystrophy in Nigeria
The story of two brothers

Esien Ita, 60 and Eyo Ita, 56 are two brothers, both born normal but now either bed-bound or on wheel chairs for the past thirty years averagely.

Esien had a normal secondary school career which he completed in 1965 but by his last one year in school, when he was 16, it became obvious that he had a problem in his limbs as he walked with a strange gait. This was the beginning of his lifelong condition. Medical attention was sought up to Lagos University Teaching Hospital where he was diagnosed as suffering from muscular dystrophy and that there was no cure.

Despite his condition Esien took up normal employment with the Nigerian Ports Authority, Lagos in 1966 more or less compulsorily to look after himself and his siblings, the family having lost to death their father and breadwinner in 1963. With the chaotic transport services in Lagos one should imagine Esien struggling to get on board a bus amidst a teeming crowd of able-bodied commuters. But this is what he had to go through every working day, to and fro, for nine years when he had to finally bow out of paid employment as his legs could no longer effectively support him.

Leaving employment in that kind of circumstance in Nigeria means absolute loss of income because there is no disabled persons pension or social welfare scheme in place. So for thirty-two years Esien has been without a defined source of livelihood except that the Lord God has provided through his little efforts in enterprise/investment in shares and the support of family. In his words, “in Nigeria the governments pay little or no attention to the disabled; invariably it is your family that takes full responsibility for your care and in our case that we are two brother sufferers the situation can be imagined.”

Eyo also had a normal secondary school career and towards his final years he also developed this strange gait and going by the experience of the older brother it was clear that he was going to develop dystrophy too! The family was devastated. Not just one sufferer but two! Meanwhile, in family history it could not be recollected by the older ones any member who had suffered this strange illness along the line. It became a wonder how this uncommon illness found its way into the Ita family to destroy its joy. So if hereditary is ruled out it is puzzling to lay minds how one can come by this illness. I know your researches had long answered this question but it would be appreciated if you can use the opportunity of this specific case(s) to re-educate us and readers.

Up till now the family has not come across any other known sufferer in Nigeria but we guess that there must be few others in the recesses of their homes just like us. This statement is to further underline the lack of policies, programmes and activities designed/planned by governments, corporate business, non-governmental organizations, charities(if they exist), etc for the disabled to actualize themselves and be effectively part of the overall society. Thus they are confined to their homes and nobody knows about them.

Eyo finished his secondary education in 1971 and was employed in Government Coastal Agency, Lagos. He too joined his brother in the daily hassle of catching a bus to work. In 1976 he won an in-service training sponsorship that took him to Thurock College, Essex, England. Eyo seized that opportunity to undergo a medical examination whereby a biopsy was done and muscular dystrophy was confirmed.

By 1989 Eyo was retired from service on grounds of failing health. Eyo is luckier than Esien in that he was able to serve long enough to qualify for retirement. So Eyo has been a pensioner since then on a monthly pension of 10500 naira (equivalent of 40 pounds). The paltry sum apart, this stipend is not paid regularly. Sometimes for up to one year no payment is made and to resolve any lapse. assuming the non-payment was not general, one has to travel to Abuja, the nation’s capital, a road journey of ten hours from Calabar where the family lives. Of course Eyo does not embark on the journey as he would be unable to move around the government offices, so it is a brother or a sister who goes on his behalf and many times without achieving result.

In Eyo’s words: “I once owned and drove a car until early 90s when I had difficulty in pedaling/clutching, so I stopped driving. With no means to acquire a purpose-built car I look at the past with nostalgia.” “Years past my brother introduced Target MD to me to keep hope alive and from reading it I learnt about different types of MD. I have not been told what type I am afflicted with. I can only describe my condition thus: I cannot stand on my feet, lift my hands nor clench my fists. When I turn my head to look backwards I feel pain and stiffness in the neck. With little effort I sit up unaided.” So perhaps with this description you can satisfy Eyo’s desire to know his type of MD.

Last year Esien and Eyo joined a disabled cooperative association where meetings are held monthly to discuss common interests. Through this association they were able to get motorized wheel chairs from the state government. That was Eyo’s first wheel chair but Esien’s second, his first being a manual one.

They enjoy leisure listening to radio, watching television, playing scrabble and monopoly aided. They hope for improved opportunities to break their idleness and stem the difficult socio-economic environment. They keep hope alive that a cure for their condition will be found in their lifetime and it will be affordable.

This is written by Ekpe Ita, 58, the brother sandwiched between Esien and Eyo