Friedreich’s Ataxia Survivor Starts Support Organization in India

Submitted by Chandu Prasad George.
I faced many similar health problems as my sister did.  In my childhood, I couldn’t run, walk or play nay physical games as I used to get fatigued too easily. After my sister was diagnosed with Ataxia, it was thought that I too was showing similar signs of the disease. Things like swaying while walking and frequently falling down were pointed out. Later, in 2001, I was Diagnosed with Friedreichs Ataxia through a DNA test at CDFD, Nacharam, Hyderabad.

My doctor told me that Ataxia was an incurable, rare disease and my changes of survival were bleak. Because I lacked awareness and better medical counseling I fell into a deep depression.

By age 15 my life as an Ataxia patient had begun–and I realized I needed to accept the reality of the disease, and I needed my family to understand and accept it too.

I’m now 33 years old and dependent of my aged parents both physically and economically. I am currently unemployed and finding each day is a new struggle–what worked yesterday won’t work today–a mount of forgetfulness brings me crashing down.

My symptoms like my susceptibility to colds and infections, sneezing, worsening vision in one eye and my general “slow” demeanor means I need extra time to complete simple tasks. I do face social discrimination at times from friends itself and due to the social stigma attached with disability in our society I don’t socialize or go out much or mingle with others.

Due to my awkward external appearance I tend to stay indoors and am happy in my peaceful surroundings. First I lost my ability to walk independently, later I used a wheelchair and now my health has progressed to the point where I need to be assisted when getting into my wheelchair, and have to be helped in every daily activities like using the bathroom.

The determination that gets me through is from the beautiful experiences and situations, that I’ve had with my wonderful family– which is my main support system.

Ataxia has affected not only me, but my whole family. They have helped me to accept Ataxia positively. They are who I consider my main pillar of strength. I do a little computer work and use the internet and do counseling for fellow Ataxia sufferers in my country. I’ve even formed my own organization called “Support Group for Ataxians in India (Samag).”  Through this organization my sister, parents and friends have worked tirelessly and enthusiastically for the cause to raise awareness for this disease.

My main source of strength, Inspiration and support is from my parents and family, and its through them have grown to be ATAXIA SURVIVOR today.