Life can be meaningful for Muscular Dystrophy affected persons

KUMARHATTI: In a 3-day 16th annual All India Medical Camp at Trimbakeshwar near Nasik in Maharasthra recently some of the participants came out of their homes after years and got the opportunity for first time to be in such a programme to know and share about their own disability. This was disclosed by Ms. Sanjana Goel the locally based President of Indian Association of Muscular Dystrophy (IAMD) who organized the camp, here today.

She said, Mr. Hitender who hailed from a village near Nashik came out of his house after eight years. In his family three members were affected with muscular dystrophy. When joined, Hitender wanted a cure of disease, however on the third day he said that he was not thinking about the disease any more but wanted to do something meaningful in life, maintained Ms. Goel.

In camp the children were especially motivated for proper education and educated young participants were motivated to live life meaningfully by way of using their qualification and talents. The participants and their parents got valuable inspiration from lives of some muscular dystrophy affected individuals presented in camp. All were suggested for proper management and active living with positive attitude, she pointed out.

The camp was aimed at providing medical consultation to the muscular dystrophy affected persons through renowned doctors who were working and involved in the latest scientific research in the field, asserted Ms. Goel. Other allied activities such as counseling to the affected individuals and their parents, interaction and sharing of experiences and legal information were also important features of the camp. The 75 muscular dystrophy affected individuals came to participate from various states like Himachal Pradesh, Delhi, Maharashtra, Gujarat and Madhya Pradesh.

Ms. Goel said that the main feature of camp was medical check up of muscular dystrophy affected individuals by Dr. Sumit Singh, Neuro Surgeon and leading researcher on Stem Cell Therapy at AIIMS, New Delhi and Dr. G.R. Chandak, Scientist and Medical Geneticist at Centre for Cellular & Molecular Biology in Hyderabad.

She said, during camp the light was thrown upon progress of Stem Cell Therapy research and ray of hope for cure of muscular dystrophy by this emerging method. At present, this was the only ray of hope for treatment of muscular dystrophy, which was incurable so far all over the world.

This cruel disease could be prevented with the help of DNA test in case of particular types, pointed out Ms. Goel. The affected individuals’ DNA test, their family history and DNA test of probable carriers in the family could make it possible to assess the chances of disease in future babies and its prevention can be done by DNA test of fetus, fluid etc. This could break the cycle of occurrence of muscular dystrophy in the family and can prevent future occurrence, she maintained.

The camp also stressed upon Persons with Disabilities Act 1995 with special emphasis on provisions on rights of disabled persons and their parents, their education and employment, she remarked. The objective was to make them aware of their legal rights so as to enable them to get them implemented for equal opportunities, full participation and protection of their rights.

The IAMD aimed to strive for creating such an atmosphere in the whole society to make it a better living place for Muscular Dystrophy affected persons, concluded Ms. Goel

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