What is Duchenne Muscular Dystrophy? Rally to raise awareness for DMD treatment in Delhi

What is DMD - Duchenne Muscular Dystrophy? 

Chances are, you’re lucky and you’ve never heard of this killer disease that almost always affects boys.

Most people get to know about this relatively rare genetic disease only when a boy in their family or friend circle gets diagnosed with it. However, the medical data suggests that out of every 3500 males born in India, one will be born with DMD. So, it’s rare, but not very rare!

DMD is a muscle-wasting disease that first starts with the weakening of leg muscles. The disease, in the form of a defective dystrophin gene (which hinders the production of very vital dystrophin protein), is present since birth. However, the first symptoms manifest around the age of 5-7 years when the child finds it difficult to walk due to weakness in the calf muscles. Growing rapidly, soon it engulfs every muscle of the body including the heart and lungs. The result is - most of the children are wheelchair-bound before they reach high school. Most of them don’t live beyond their 20s.

Based on the true story, the movie Salaam Venky which was released last year highlighted the challenges of this disease in a very sensitive manner. You can get more information about this lethal disease here.

Is there a treatment for DMD?

Unfortunately, not. As of now, there is no cure for this disease anywhere in the world. Doctors mostly prescribe heavy doses of steroids which prolong their mobility by a few years. But, as you know, steroids take their toll in the form of severe side effects.

There are now some experimental drugs and treatments available in developed countries that have shown some promise. However, getting them in India at an individual level is almost impossible and the cost (running into crores) is simply out of reach for most families.

How are the families of DMD children coping?

Imagine a cheerful kid, the fountainhead of happiness in a family, turning into a teenager who can’t even walk. He is wheelchair-bound by the time his friends go to college. By the time his classmates join their first jobs, the DMD children need help and support even in bed, while eating and even breathing at night.

With no effective treatment, no help, and no light of hope at the end of the tunnel, the trauma that the DMD families face day in and day out, is beyond words. The rapidly progressive disease not only snatches the child away, but it also tears the families apart. Even the supportive medical care to keep the child alive, drains them emotionally, physically, and financially.

Many families are so broke fighting the devastating disease that they commit suicide. On 26th January this year, Sanjeev Mishra from Madhya Pradesh, who was also a councilor and BJP's divisional president, committed suicide along with his family. Both his sons were suffering from DMD.

What do we hope from this rally?

We want to request the society, the government, and the prime minister Mr. Narendra Modi that our children deserve to live. Please help us “Save Our Sons”.

For the first time, hundreds of parents from all over India, who’ve been fighting a lonely battle against this dreaded disease, will come together at Jantar Mantar to tell you more about our fight against this devastating disease. In the 95th edition of Mann ki Baat, the PM mentioned Muscular Dystrophy and highlighted the need for awareness and focused efforts on research and treatment.

We wish to sensitise society and the media about this killer disease and its challenges. We also need your (media’s) help in drawing the Health Ministry’s as well as Prime Minister’s attention to our following 04 requests:

1. Expedite the process of bringing in experimental treatments like gene therapy and exon skipping to India. Create an empowered panel with representatives from the DMD parents to quickly remove the bottlenecks that delay this process. DMD children are running against time.

2. Provide free medications and physiotherapy facilities to all DMD children. Most of us find it difficult to afford medical care as the disease keeps getting bad to worse. Even medical insurance does not help as most of the insurance companies deny reimbursing the expenses we incur for treatment of the complications related to DMD. Can the government make rules watertight to make the insurance companies liable?

3. Support and fund indigenous research for developing effective treatment of DMD. Recently, prime minister Modi, while addressing a post-Budget webinar on health and medical research said, “our entrepreneurs should ensure India doesn't have to import any technology and becomes self-reliant”. Indian scientists and medical experts are regarded as among the world’s best and we hope they can surely do something to help our children.

4. The government has identified hundreds of rare diseases under the National Policy for Rare Diseases 2021 (NPRD). Within the rare diseases, make a separate category for “life-threatening diseases” to prioritise help and support for them. The disease may have crippled the body of DMD children, but not their spirits.