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Greater awareness needed about ataxia disorder, says Guruprasad
Founder, ataxia awareness charitable trust, says there ar various reasons for Ataxia to occur, but those reasons are not confirmed
Three members of the Kottapalli family from the city who are suffering from Ataxia, a form of irreversible neurological disorder which has no treatment, have established the Ataxia Awareness charitable trust as a support group. The disease causes loss of body movement and balance.
Kottapalli Guruprasad spoke to Nozia Sayyed about the initiative.
You have established a support group for Ataxia patients. Tell us something about this disease.
It is a neurological disorder and there are various reasons why it occurs, but those reasons are not confirmed. One of the reasons doctors give us is a genetic predisposition. In my family alone, three people have been affected by it, my father, me and my brother. All three of us depend on my mother for our routine work. This disease starts affecting your brain and progresses to degeneration of the brain cells leading to loss of bodily movement and balance. It affects all the body parts and results in slurred speech as well as poor vision and hearing. It leaves a person with muscular dystrophy and paralysis as well. There is no treatment for it and the condition is irreversible. However, doctors provide only symptomatic treatment to provide some relief from fatigue, dizziness or loss of balance.
When did you start this group? What are your objectives?
We started Ataxia Awareness (guruprasad_r@yahoo.com) in 2010 and the reason was very clear. It was aimed at spreading awareness about the disease and help the patients become independent and find employment. I was affected when I was 27 years old and now, I am 45. The disease has progressed so much so that I am using a wheelchair and not only is my speech affected, but it has affected my eyesight and my hearing as well. We all three in our family are unemployed and depend heavily on savings of my father who is now 75 years old. He too is affected with it and is bedridden.
What kind of challenges are you facing and what kind of support do you require?
Everyday challenges include getting the routine work done. Right from getting up from bed to eating and boarding an autorickshaw, everything is challenging. We constantly need an attendant who can help us.
What is the situation of Ataxia patients in other countries?
In countries like Poland where I had been many years ago, I came across government institutions and rehabilitation centres which provide help to patients suffering from ataxia, but here, there is no awareness about it. We plan to come up with a centre, but need help from the government. We want a place where people like us can find care, the purpose of living and some employment if any. We need funds for the same which are not forthcoming.
