Man with cerebral ataxia to join ‘Home For Rare’ in Bengaluru

Namrata Devikar
Monday, 21 January 2019

Vilas Shinde, a 43-year-old man from Pimpri, will soon be joining the country’s first-of-its-kind assisted living rehab centre for people with rare diseases in Bengaluru. Shinde has been suffering from cerebral ataxia since 1990. 

Pune: Vilas Shinde, a 43-year-old man from Pimpri, will soon be joining the country’s first-of-its-kind assisted living rehab centre for people with rare diseases in Bengaluru. Shinde has been suffering from cerebral ataxia since 1990. 

Ataxia is a rare disease where the person suffers from lack of muscle coordination which may affect speech, eye movements, ability to swallow, walking, picking up objects and other voluntary movements. 

He aims to spend the rest of his life teaching and spreading awareness about rare diseases at Shanti Sadan Hoskote - Home for Rare, at Bengaluru.

Speaking about the assisted home for patients with rare diseases, Prasanna Shirol, Co-Founder and Executive Director, Organization for Rare Disease India (ORDI), Bengaluru who was recently in the city, said the rehab facility is for helping patients with rare diseases. The rehab centre is his brainchild. 
“We are trying to get these patients together so that they can have supportive care. Many patients need physiotherapy and similar treatment on a daily basis. Also, these patients can an inspiration for others,” said Shirol.

Education affected
Speaking to Sakal Times, Shinde said he was diagnosed with ataxia when he was in Std IX.

“Even after the diagnosis, I passed Std X and Std XII and then I got admission in first year commerce. But in third year I failed. When I went to the principal to take readmission, he told me there is no point in getting education as I am suffering from this disease,” said Shinde.
 
After this incident, Shinde dropped out of college. “I wanted to complete college and take a reputed job. However, with my condition it was not possible,” said Shinde.

Shinde said his condition is similar to that of a person under the influence of alcohol.

 “Under the influence of alcohol, a person loses balance and voluntary moments. In cerebral ataxia the same thing happens. However, after a good night’s sleep the drunk man gets better. But I don’t. Due to my eyes and walking position many people thought I was drunk. But that was not true. The condition I have is degenerative and slowly my other body parts started getting affected,” said Shinde.

Family support
Shinde said today he can walk but standing without the support of a wall is difficult.

“My family has been supportive. My mother and I, live with my brother and his family. Now that I have decided to shift to Bengaluru, they are still supportive. I want to keep myself mentally and as much as possible, physically active. That’s the key to better living, especially in this condition,” said Shinde.
 
He said he wants to spread the word and give hope to others with similar conditions. “I decided to go to Bengaluru because there, with the help of other organisations, I can meet people who have similar conditions. I want to tell them they have hope and their disability should not let them restrict themselves,” said Shinde. 

What is cerebral ataxia?
Ataxia is a rare disease where the person suffers from lack of muscle coordination which may affect speech, eye movements, the ability to swallow, walking, picking up objects and other voluntary movements.

What is the prevalence of cerebral ataxia?
A global epidemiological study on ataxia in 2017 reported an estimated overall prevalence rate of 26 per 1,00,000 in children.

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