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Pleas of people with rare disorder in vain
Enduring the incurable progressive muscle weakness, people afflicted with the rare and fatal disorder muscular dystrophy have demanded that the government help ease their sufferings by treating them as special cases, distinct from other disabilities
Santosh Nagar: Enduring the incurable ‘progressive muscle weakness,’ people afflicted with the rare and fatal disorder –muscular dystrophy – have demanded that the government help ease their sufferings by treating them as special cases, distinct from other disabilities. The Telangana Muscular Dystrophy Association (TMDA) which has made several representations to the State government is slowly losing hope that the authorities would redress their grievances under the provisions of Rights of Persons with Disabilities (RPWD) Act, 2016.
Every month, the affected individuals numbering around 2,700 throughout the State receive mere Rs 1,500 in the form of pension, which they feel would not support their sustenance throughout the month. Moreover, given the fact that these patients need an attendant or an escort for assisting in all kinds of physical activity, they feel that hiking the pension would help them engage escort and would help sustain.
G Vinod Kumar, treasurer of Association, said that in Telangana about 2,700 muscular dystrophy patients were there and most of those enduring this disorder were very poor and remain dependent on their parents. “Parents are unable to help us in our daily activities like walking, eating and even going to toilet. Without a helper we cannot sustain, as all the muscles and organs get weaker and health condition continuously deteriorates each day,” he lamented.
The government is providing pension of Rs 1,500 per month and this year government sanctioned 50 motorised wheelchairs to muscular dystrophy patients. TMDA, which was started in 2017, has a membership of 250, starting with an age of 2 years to above 50 years. Finding no help, they are helping each other with mutual contributions and have been requesting the government to provide better facilities and good share in social welfare schemes.
Muscular dystrophy has no treatment and remains a non-curable disease. Physiotherapy may help improve muscle strength and functioning, but there is no permanent cure. Developed countries like UK and USA are undertaking research to find cure to the disease, which affects one in thousands.
The association demands that the government provide Rs 15,000 as pension, care giver allowance, allotment of home care centre, supply of powered wheel-chair and conducting of research in India to contain the disease and also to provide free medicines under the provisions of Rights of Persons with Disabilities (RPWD) Act, 2016. “We request that these facilities be provided without any income ceiling and restrictions,” the association leader pleaded.
