Building a platform for people with ataxia – My Take by Swasti Wagh, Founder, Ataxia Awareness Society

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My Take this week features Swasti Wagh, the Indore-based founder of the Ataxia Awareness Society. She talks to NewzHook about her battles coping with the disease Ataxia.

I had a normal childhood, with everything going normal. I was healthy, active and good at studies. The only problem and that was occasional was pain in the chest and palpitations while running very fast. This continued until I was about 14 years old, after which I felt slight unsteadiness and a shivering in my legs, especially while taking the stairs and in the dark.

My parents put this down to some weakness or a personality complex, as I was lean and thin. They thought things would get better with time, but my problems only grew. I would fall down often, feel intense fatigue and couldn’t understand what was going on.

Diagnoses followed by shock

Many doctors we consulted had no diagnosis. Then we visited a neuro-physician, who prescribed some tests like an MRI, CT scan etc. That led to the diagnosis of Ataxia, a rare, progressive and incurable disease. I was stunned and thought my future was finished. My family felt the same but gradually my parents gathered courage and motivated me to complete my graduation.

Focusing on studies gave me some direction. Initially I could walk with a little support but the imbalance and lack of coordination grew. In spite of these problems, I continued with my education and did a masters degree in Applied Mathematics. I was also diagnosed with insulin dependent diabetes, which meant more hospital trips and allied therapies with little fruitful results

. To my surprise no one suggested genetic tests for the diagnosis of the type of ataxia I had. Perhaps this was not available in India at the time. Through the Internet I got to know that this could be confirmed with a DNA test but this facility was not available in my city. I managed to get myself tested and it was confirmed that I had Friedreich’s Ataxia (FRDA).

Career struggles

Though I did my post-graduation with good marks, I could not get any job because of my health condition. So, I started giving tuitions. Along side, I decided to work towards creating awareness about ataxia and work for the welfare of patients through seminars and workshops in Indore.

In less than 10 years, I became a wheelchair user. I felt burdened – physically, emotionally and financially. Despite this I involved myself in research on FRDA with my father’s guidance. I have six research publications and presentations on FRDA to my credit. Recently I registered an NGO called Ataxia Awareness Society (AAS)along with my friends. Our main objective is to work towards creating awareness and welfare of patients. We also aim to prepare a database of ataxia patients so that all Ataxians can be benefited.