LIVING WITH A RARE DISEASE
Hello everyone, I am Sarthak Gawri and I am suffering from a rare disease called Duchenne Muscular Dystrophy. It affects muscle strength of the whole body severely making most patients wheelchair-bound by the age of 10-12 years. I was diagnosed in 2008 at the age of 7 years and started using wheelchair in 2011 at the age of 10 years. In the first few years I was not aware of the stress caused to my family due to this. Now at the age of 18 years, I have come to understand about my disease, related problems and ways to tackle those problems. It was mentally difficult for me and my family to accept this disease easily but after mentally accepting it we feel relaxed and capable of handling it. Positive thinking, family support, knowledge of disease, regular physiotherapy, education, hobbies, keeping up to date about status of treatments, researches, trials, seminars etc. by joining support groups of various rare disease associations, and many other habits have helped us in finding hope living with a rare disease. I have experienced the insensitive and rude attitude of people towards differently-abled persons. Many people stare at us like we are some kind of ghost or devil but there are some who are kind and helpful as well. I want to tell everyone that we don’t want sympathy from people, we want acceptance and respect as fellow and equal human beings.
I just want to give a message to the fellow people suffering from rare diseases:
Having a rare disease does not mean that your life is over. I urge you all to never give up education. Education will help you when others won’t. You can prove yourself with the power of education. I currently study in 12th standard from National Institute of Open Schooling (NIOS). I am also enrolled in web designing courses, which enables me to work as a freelancer and make websites for clients
