By Registered Post with acknowledgement due

7th September, 2010

Honorable Shri. P. Chidambaram
The Home Minister of India
Ministry of Home Affairs
North Block
Central Secretariat
New Delhi -110001

Respected Sir,

Subject: Pleading to include Muscular Dystrophy as one of the types of disability in the Census 2011 questionnaire.

Greetings from Muscular Dystrophy Foundation India (mdfindia)!

This representation is being made on behalf of more than 1500 Muscular Dystrophy patients and parents from Tamil Nadu and whose names are listed in the document attached herewith. Muscular Dystrophy community in India remains marginalized and unheard even within the disability population for want of awareness and lack of an official data with the government/s and as well civil society organizations. An empirical data gathered by the Muscular Dystrophy Association (MDA) of USA mentions the occurrence of MD to be one in every 2000 children while muscular dystrophy organizations in the Europe observe it to be one in every 3500 population; neither India nor any of its states has any data about it. However, on the same scale of 1:2000 as stated by the MDA, if not more for the poor living conditions and lack of awareness, one could well imagine what could be the number of MD children in India with its 1.2 billion populations.

While the Duchenne Muscular Dystrophy (DMD) Children in developed countries could live up to 23-28 years of age, most often the DMD children in India die during 13-17. None of the clinical trials being in progress globally prefer to recruit patients from India for their clinical research. This could well be attributed to lack of official recognition to the disease along with many other reasons. As parents of muscular dystrophy patients, we are genuinely afraid that the absence of an official data on muscular dystrophy might constraint our access to cure that is to come in the near future. The forthcoming population census would be the best

opportunity to enumerate muscular dystrophy patients since it would also provide the scope for correlating and analyzing the socio-economic conditions of the muscular dystrophy patients in India.

It is therefore, we hereby request the honorable minister to include Muscular Dystrophy as one of the types of disability listed within the questionnaire which is to be used for the population census commencing on 9th February, 2011.

This would surely help not only enumerating the Muscular Dystrophy Patients in India, but also provide a scope for accessing cure that is to come soon. Failing to include Muscular Dystrophy in the Census 2011 would make us wait for another 10 years until the next census and by the time we would have lost many children.

Hope the honorable minister would kindly appreciate our request and provide suitable orders to include Muscular Dystrophy as one of the types of disability in the forthcoming census 2011.

It would be our great pleasure to offer all those information/ clarification that the honorable minister may require in the process of fulfilling our request.
Look forward to your kind support and favorable actions in this regard.

Yours sincerely,

M. Louis
Executive Director

Enclosures:

  1. List of Muscular Dystrophy patients and parents on whose behalf this representation is being made
  2. Information brochure of Muscular Dystrophy Foundation India and
  3. Copy of the 1st ever news letter in Tamil on Muscular Dystrophy

About Muscular Dystrophy
‘Muscular Dystrophy’ (MD) refers to a group of degenerative, muscle destroying, neuromuscular disorder diseases to which no cure is available till date. The cause of the disease is simply said to be ‘a defective gene’ and the disease is hereditary as well as ‘instant’ by its nature. The progressive deterioration which usually starts from external muscles of the body spreads to destroy the internal such as lung muscles and cardiac muscles. Though there are variations across the 9 major types of Muscular Dystrophy, all of them collapse the normal living ability of the afflicted. Particularly, the two types: Duchene Muscular Dystrophy (DMD) and Becker Muscular Dystrophy (BMD) which are the most common are the killer diseases too. When the DMD confines a patient to wheel chair in the age of 7-10, it could also take away their life by 13-17 at the most. However, this situation is not universal!  It varies from country to country, and patient to patient; depending on the living environment, medical and other support services available. Whatever be the age of death, the DMD disables the person by almost 100% forcing them to depend on other’s help for everything: to bathe or eat or just drink a glass of water. Besides this total dependency, the pain and other secondary problems caused by MD are usually beyond the managing level of the patient; just unbearable for a child.