15 Sep :Indian Association of Muscular Dystrophy had its three day national camp from 12th to 14th September, 2008 at Indira Holiday Home, Sector-24, Chandigarh. More than 400 persons including 105 Muscular Dystrophy patients from length & breadth of India attended the camp. Patients from far away places such as Gujarat, Andhra Pradesh, Rajasthan, J&K, Punjab, Haryana, Himachal Pradesh & Delhi attended the camp.
Smt. Kartari Devi Hon ‘able Health Minister of Haryana was the Chief Guest. Commissioner of Disability (Haryana) was also present on the occasion.
Muscular Dystrophy is a genetic disorder. The muscle fibres are gradually replaced by fatty tissue and the normal function of the muscle is impaired. There is gradual degeneration of muscles. There are many types of M.D. It can affect people of all ages. Although some forms first become apparent in infancy or childhood, the others may not appear until middle age or later. One of the severest types is Duchenne MD. The patient needs a wheelchair at a tender age of about 10. There is no known cure of MD anywhere in the world.
Dr. G.R. Chandak scientist and medical geneticist, CCMB, Hyderabad gave genetic counseling to patients. Dr. Sumit Singh Neurologist from AIIMS, Delhi gave the latest information regarding stem cell treatment and use of steroids.
Dr. Goswamy Physiotherapist from PGI came with his team of physiotherapists and gave useful tips regarding physiotherapy to each patient as physiotherapy is the only tool for the management of Muscular Dystrophy.
Dr. Raj Bahadur, Director Principal, GMCH, Sector-32, Chandigarh and Dr. Kulhara HOD-Psychiatry, PGI, Chandigarh gave useful information about the management of Muscular Dystrophy.
Ms. Veena Sharma from Human Rights Law Network gave useful information regarding rights of disabled persons as contained in the Persons with Disability Act 1995.
Ms. Joginder Mukherjee Professor of Psychology came with her team of psychologists and did counseling sessions with the patients. Many students from Punjab Engineering College, Chandigarh joined the camp as volunteers and did marvelous job in making the camp a success.
The three day camp was not limited to medical sessions only. All the patients along with their family members staying at Indira Holiday Home (Venue of the Camp) were made to wake-up early in the morning for Yoga and Pranayama sessions.
Special games for the Disabled were organized and everyone participated.
The most enjoyable was singing, dancing session. Able bodied persons helped wheelchair bound persons by holding their hands and swinging on the tunes of music.
The attitude of people needs to change and the discrimination between the abled and the differently abled has to end. Disabled friendly environment has to be created. Every person has the right to live a dignified life says Gurbir Singh Kochar, President of the Associations Chandigarh Chapter.
There is a cure for muscular dystrophy.It is found that, with the start of medicine there is gradual improvement in the patients condition with tone and power in affected muscles. and with long term medicine patient can lead to normal life.
many patients are under treatment with positive results and satisfied with the treatment.
few cases have been cured but still taking medicines.
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I just want to bring the attention towards the end of the article- “Able bodied persons helped wheelchair bound persons by holding their hands and swinging on the tunes of music”.
Who says that people using wheelchairs do not have the ability to do things ? They are like others and I strongly criticize the linguist twist that the so assumed abled medical fraternity assign to who they think are others and hence disabled.
I am really impressed with the efforts of the president Mr.Gurbir Singh Kochar who has organised such a well informative and motivated camp. Above all the hon’ble Health Minister of Haryana Smt.Kartari Devi has spared her valuable time to be the chief guest. This camp must have boosted the morals of the MD persons and sharing their experiences with each others. I have one suggestion as follow:- Like western countries, our state govt. should float a lottery to raise money for MD research and help for the treatment of people who can not spend money for the treatment, expenses incurred daily and other necessary day to day help. In CANADA there is ” The Princesss Margaret “cancer research centre who float a big lottery and the money they earn after draws is used for research. Their web site is HelpConquerCancer.ca A great idea ! My good wishes to all camp participants.