What is Muscular Dystrophy?

Agnes Kyotalengerire
IN his fi rst year of life, Gerald Musisi was a bouncing little boy. As he started school, he dreamt of becoming a teacher. Later, his body started wasting away. Today, at the age of 22, he is confi ned to a wheelchair, waiting for the day when he will say goodbye to this earthly life.

He has seen his brothers suffer in the same way and die one by one. There is nothing hospitals can do to stop him from dying. His illness, referred to as Duchene muscular dystrophy (MD), has no cure. Doctors can only delay the death a little bit by using special exercises that slow down the rate at which the muscles shrink.

Dr. Justus Byarugaba, a paediatric neurologist at Children’s Medical Centre, Bugolobi, says once you are born with the genes that cause this illness, your fate cannot be reversed. Boys inherit the genes from their mothers.

After failing hospital treatment, many parents spend a lot of money trying out various traditional healers, but end up frustrated. Because of stigma, the children are always confi ned to the backyard.

HOW IT STARTS
Children with the condition grow normally for about two years and then the fi rst symptoms begin to appear, says Prof. James Tumwine, head of neurologist department at Mulago Hospital. It begins with progressing muscle weakness and swelling of the calf muscles.

In some children, the biceps also enlarge. Gradually, a child starts to stumble, wobble and fi nds diffi culty in getting up. Eventually, the child loses the voice, fails to walk and is unable to sit upright.

The spine starts to curve in because the condition affects the muscles. This compromises breathing and by the age of 20, some of them are not able to survive without being given oxygen artifi cially. Most of them do not live beyond 30 years.

HOW BIG IS THE PROBLEM?
Prof. Tumwine says no one in Uganda has comprehensive statistics about the disease because parents give up on seeking medication once the children do not respond. Many are never taken to hospital. However, globally one out of every 3,500 boys have this abnormality. Girls may carry the genes but do not show any symptoms. It is estimated that about 1.6 million babies are born in Uganda every year, of whom about 800,000 are boys.

Considering the global prevalence, one can make an educated estimate that about 230 boys are born in Uganda with this abnormality every year. At Katalemwa Cherishire Rehabilitation Home in Kampala, about three to four new cases are registered every three months, according to Emmanuel Odhiambo, a senior physiotherapist there.

TREATMENT
Though there is no medical cure yet, Dr. Byarugaba affi rms that when detected early, management can be done to minimise the effects. He warns against neglecting the children with the condition. “Children affected by muscular dystrophy tend to be intellectually alert because the condition does not affect the brain,” he says.

ALTERNATIVE MEDICINE
Dr Juuko Ndawula, a specialist in alternative and complementary medicines, says there are over 30,000 diseases in the world and not all can be treated with the 200 synthetic medicines available so far.

He says whereas there is no cure, there are natural medicines that can be used to stabilise the muscles and prevent wasting away if the treatment is started early enough.