About Us

After about 10 years in active service IAMD takes some consolation from the fact that on account of it´s continued and relentless efforts families of fellow sufferers have benefited vastly.

We have been working on a multi-pronged strategy to help mitigate the sufferings of these victims in every conceivable manner that is humanly possible. These efforts are being made at four different levels.

1) Through our helpline we envisage Direct Contact Program (D.C.P) with the patients mainly by telephone, newsletters and circulars. This has helped alleviate the self esteem level of patients tremendously. As a result Muscular Dystrophy Families have been saved from the Omnipresent Quacks, Witch Doctors and self styled Hakeems.

2) The feeling of being united in a brotherhood and at difficult times has bolstered confidence of our patients to the extent that today they are economically self dependent and hence to a certain extent, physically as well.

3) Our Specific Need Oriented Program (SNOP) has focused on the specific needs of our patients e.g. well-designed wheelchairs, gadgets, financial aid etc.

4) Diagnosis is the basic vagary associated with Muscular Dystrophy. Efforts are still on to persuade state run health machinery by way of hospitals to establish proper diagnostic facilities and workshops for doctors to facilitate the diagnosis of Muscular Dystrophy. There is constant follow up with concerned health authorities to make life a little easier for the already despondent patient.

President´s View

India is a vast country having a population of over one billion people. Nearly 7% of our population suffers from one or the other kind of disability. States have some data regarding people suffering from disabilities like polio, but data regarding Muscular dystrophy patients is non-existent.

To add to it nearly twenty five thousand children are born with Duchenne Muscular Dystrophy (DMD) each year, as per an estimate by Dr.I.C. Verma (Head, Deptt. of Genetic Medicine, Sir Ganga Ram Hospital, Delhi). DMD happens to be just one of the forty odd types of Muscular Dystrophies known to us. This in itself is a telling tale of the gravity of this problem. To compound this problem, lack of active involvement of the govt apparatus in determining the actual extent of the disability problem in our country, leave alone doing something for these hapless people has acted as a big discouragement for individuals and voluntary organizations from taking up the cause of the disabled.

Government has although paid some attention to the disabled suffering from other disabilities like polio and ways to prevent it but no effort of any kind has been made for the suffers of Muscular Dystrophy. Though we are not in any way undermining the sufferings of a child suffering from polio who requires as much care and compassion as any other disabled child, but the kind of help and awareness exercise that needs to be undertaken should depend on the level of disability and the kind of crippling affect it has on the sufferer rather than the form it manifests itself.

We, at IAMD have taken upon ourselves the task of creating awareness amongst the masses regarding this cruel disease and it´s ramifications not just for the sufferer but the entire family as in many cases more than one family member is affected with it. We despite having very meager resources at our disposal have been doing the best we can by holding a summer camp each year and inviting MD afflicted patients from across the country to share with each other their problems and have a nice time together. We in some cases have even taken up various problems faced by individual patients and tried to resolve them by taking up their cases before the relevant authorities.

In a developed country like the U.S., the involvement of Hollywood actor Jerry Lewis in raising funds for the cause of Muscular Dystrophy patients has helped such sufferers a lot, and as a result these suffering children are often referred to as Jerry Kids. The efforts put in by a celebrity like Jerry Lewis for such a noble cause is laudable to say the least.

Here in India if we are to accomplish our mission of helping MDs lead an honourable life and with a smile on their face, a lot of funds, you support & good wishes are required. It would be a proud moment for us, if we are able to improve the life style of an MD and make his/her life a little comfortable. A broad smile on the face of an MD patient would be a befitting reward for our efforts in this regard.


Sanjana Goel

President
IAMD

 
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