Young woman crippled by rare disease reaches out to help

MUSCAT, Sept 10 – Afflicted by a rare condition called Muscular Dystrophy (MD) during her childhood, a young woman is raising awareness across the Middle East region about the disease that keeps patients bedridden throughout their life. Nawaal Akram, a Qatari national, a comedian, model and athlete who was diagnosed with Duchene Muscular Dystrophy at the age of six, is on a mission across the GCC and beyond along with her Omani counterparts. She was forcefully removed from school against her wishes at the age of 10, after which she became wheelchair-bound at the age of 12. She has since founded Muscular Dystrophy Qatar to raise awareness about the condition and was named one of BBC’s ‘100 Women’ in 2017, reflecting her inspirational efforts.

Although not very common in Oman, Muscular Dystrophy, a genetic disorder that weakens muscles that help the body move, is prevalent in many countries in the region and is increasing. People with MD have incorrect/missing information in their genes, which prevents them from making the proteins they need for healthy muscles. People are born with the problem as MD is genetic; it’s not contagious. “Anything is possible if you put your mind to it and no condition is the end. If you are doing the correct thing, you should not be afraid of it just because there are negative people around you. Otherwise, there will be no way to solve the problem. And the biggest problem is people do not reach out for help,” Nawaal told the Observer.

With this in mind, she will be speaking at a talk show on September 24 from 4 pm to 6 pm, which will shed light on this medical condition. “Muscular dystrophy, though rare, should be feared as it’s a deadly disease which makes the child bedridden,” says Dr Abdulrahman Iqbal of a private hospital. “The disease usually affects X chromosomes and is mostly seen in boys, whereas girls are just carriers of the same,” he said. According to medics, some genes are involved in making proteins that strengthen muscle fibres and protect them from injury. MD occurs when one of these genes is defective. Each form of muscular dystrophy is caused by a genetic mutation particular to that type of the disease.

“Most of these mutations are inherited. Children have a greater chance of getting afflicted with MD if any of the parents have the same,” said Dr Paul of another hospital. Nawaal dreams of bringing the community together, in which people, including teenagers with MD, talk to each other and look for a support system.