Understanding Muscular Dystrophy & the purpose of MIND- Guest Column by Krishnakumar PS
In our weekly guest column, Krishnakumar P S, a blogger and motivational speaker talks about the challenges of living with muscular dystrophy. A disability rights activist, Krishnakumar is a member of the organisation MIND, an organisation that empowers people with disabilities.
Muscular dystrophy, the the name itself can sound like a mystery. According to the Muscular Dystrophy Association (MDA), there are mainly 14 different types that are seen in people. But even today, surprisingly, this has not been fully understood. There are still unsolved answers and doubts amongst the medical fraternity regarding what MD is all about.
Clearly, this is a condition which is quite complicated to understand as much as it sounds. Though medical science is much advanced and our researches have travelled in-depth into studying the human body, it is quite unfortunate that doctors who treat MD sometimes fails to explain the depth of this medical condition. That way, the patient is also unable to understand fully about what MD is all about.
Muscular Dystrophy (MD) refers to degenerative, muscle destroying, neuromuscular disorder to which no cure is available till date. The cause of MD is simply said to be ‘a defective gene’ and the disease is explained to be hereditary as well as ‘instant’ by nature. The progressive deterioration which usually starts from skeletal muscles of the body spreads to destroy the internal organs such as lung muscles and cardiac muscles as the condition progresses.
Some forms of MD are seen in infancy or childhood while others may not appear until middle age or later. Severity of the condition, speed of its deterioration, onset of the disability or its morbidity, scope of survival, carrier risk, impact on overall quality of life etc. varies from person to person. The sad fact is that patients with this condition are getting utilised and cheated by others in the name of medicines, therapies and so on, one of the biggest drawbacks of medical industry.
Knowing the struggles of such people, we decided to form the organisation Mobility in Dystrophy (MIND) which was formed on 1 May 2017 at Thrissur, a small town in Kerala. It was a new hope for many people who were affected by MD to get support and motivate each other for a better life.
Talk to any dystrophy patients and they have two questions in mind. Firstly, who will take care of them after the death of their beloved ones? Secondly, what can they do later on in life? For some people, such questions can be endless. While some can be answered, most of them will definitely remain unanswered. MIND aims to clear all these unresolved questions. A rehabilitation centre to reach out to people with Muscular Dystrophy, we want to offer nothing lesser than the best.
There are many centres for people with MD in India. But sadly, there never was any in Kerala until MIND came into being. In this small state, we realised there is an urgent need to start something for people who have this condition. All worries and problems of dystrophy patients can be solved by MIND. But huge expenses and lack of funding still remains burden to us.
‘I have a Dream’, the famous speech by Martin Luther King is something most of us have come across. Just like him, us at MIND, has a dream that every person with Muscular Dystrophy lives freely without any tension or sadness in life. That is why MIND came into existence and we hope to reach out to as many people as possible.
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