What would you do if your child was diagnosed with a condition that that most people haven’t heard of? One that progressively worsens and doesn’t yet, have a cure?
For decades the health ministry has been focussed on more prominent diseases like Heart diseases, Diabetes, Cancer, Tuberculosis but they seem to have forgotten the 70 million people who suffer from the 7000 odd rare diseases also need their attention with regard to treatment and management
Anand and Movin, were taken aback when they found that their son, Karanveer, had Duchenne Muscular Dystrophy (DMD)., a condition where a protein called Dystrophin, which is needed for the proper functioning of the muscles is present in much lower levels than required. In layman terms it means that your child will be wheelchair bound for most of their life before they become bed ridden.
Back in 2003, blood tests done in three different diagnostic centres proved to be inconclusive. The only definitive result came from dystrophin staining in muscle biopsies. Even after that, clinicians who knew about the disease and gave guidance on steps to take were extremely hard to come by.
The Dystrophy Annihilation Research Trust (DART) was founded after having scoured the country in search of something that would help Karan. Stumbling, falling and breaking in search of hope Anand and Movin finally decided to do it themselves. This was not by any means an easy decision. Anand closed his business in 2010 and decided to focus on DART full time. This meant recruiting people qualified enough to run a research lab, looking for potential places where the lab could be set up, buying the necessary equipment and chemicals, collaborating with researchers abroad and so on.
DART is not just a research lab. For many children and parents it spells hope and faith. That someday, their child will be free of wheelchairs and restrictions and can play, run and walk like children everywhere. Their long term goal is to develop some form of treatment that is cost effective, as quickly as possible to relieve the suffering of children and families alike.
Although the current scenario is much better than it was a decade ago, it is still sadly lacking when compared to other countries. The government policy on MD is that there is no policy. There are some regulations and guidelines on rare diseases. But none of them really cater to the needs of the patients or families. India has the second largest population in the world; yet, no comprehensive database for Neuro-Muscular Disorders is available.
There are still families out there with no idea about the disease, much less how to manage it. Spread the word, raise awareness about muscular dystrophy.
If not you, then who? If not now, then when?