Muscular Dystrophy remains a neglected problem in Nepal

Kathmandu, November 8:

Some 25,000 males in the country are suffering from various types of muscular dystrophy (MD) disorder, a human genetic disorder that is not curable, according to Muscular Dystrophy Foundation (MDF) Nepal.

Speaking at the third seminar on International Level on Duchenne Muscular Dystrophy organised by the MDF here today, JP Agrawal, president of the foundation, said some 6,000 people were suffering from Duchenne MD that progresses slowly but eventually affects all voluntary muscles.

Duchenne MD is the most common and the most lethal muscular dystrophy. Children lose

the ability to walk between the ages of eight and 12 and lose movement in their arms and upper body around the age of 14. Survival beyond late 20s has been found to be rare due to pneumonia, lungs and heart complications.

“This is a very severe form of muscular dystrophy and it needs proper attention from the government because almost 85 per cent of the Duchenne MD children belong to the low-economic groups,” Agrawal added. Saying that the government hospitals had no special provisions for such patients and that the medication was also expensive, Agrawal said, “Government has to make some provisions for such children with effective medical and treatment facilities.”

Speaking at the programme, Health Minister Girirajmani Pokharel said he himself was unaware of the disease. “Now I will discuss it with experts concerned and will try my best to do something for people with this chronic disease,” he added.

The symptoms of MD are delayed growth, frequent fall, Gowers’s sign, awkward standing position and inability to hold head, said Dr Rohit Pokharel, associate professor, Department of Orthopaedics at the Tribhuvan University Teaching Hospital. “Though a full treatment of the disease is yet to be discovered, research is on and parents of affected children are normally advised to focus on rehabilitation, physiotherapy and nutritional diet,” Dr Pokharel said.

Delegates and experts from different countries are taking part in the two-day seminar organised to discuss on the disease and share experiences and best practices.