#RareDiseases – Attitude key when living with Ataxia

In our July campaign on rare diseases we look at Ataxia, which affects the nervous system. A degenerative condition, the term ataxia is Greek in origin and means lack of order.

Budding zoologist Zoyeb Zia was in high school when he realised something was not quite right with him. It started off with him being unable to kick the ball and gradually he lost control over the ability to walk easily. Many tests later, Zoyeb was diagnosed with ataxia.

Ataxia is caused due to the degeneration of the cerebellum, the part of the brain that controls body movements. The cerebellum regulates motor movements and is responsible for our posture, balance, speech and coordination and overall muscular activity. In people with ataxia, the cerebellum is not able to perform some of these functions.

Ataxia can affect people of all ages, varying in intensity and symptoms. It can appear at any age or develop over time.

Below are some common forms of ataxia:

• Ataxia Telangiectasia

• Episodic Ataxia

• Friedreich’s Ataxia

• Multiple System Atrophy

• Spinocerebellar Ataxia

• Sporadic Ataxia

“The biggest hurdle due to ataxia is the dependence on others for everyday tasks”, says Zoyeb, who is an Assistant Professor of zoology. “Not being able to move from one location to other without support and needing constant care add to the mental stress”. Making it worse is the lack of infrastructure such as accessible roads and buildings.

Zoyeb, who has spinocerebellar ataxia, encounters many challenges, but pursues his passions regardless, be it academics or football.

There is no cure at present, but there are therapies and medications that provide some relief to patients. What is harder to cope with is the stigma.

Chandu Prasad George and his sister Vijaya have Friedreich’s Ataxia, a diagnosis that has changed their lives.

I do face social discrimination at times from my friends, so does my sister. This is due to the social stigma attached with disability in our society. We do not socialise and go out much or mingle with others. Due to my awkward external appearance, I tend to stay indoors. – Chandu Prasad George, Ataxia patient

Chandu says without his family behind him, life would have been far worse. “The determination that gets us going till now comes from the beautiful experiences in situations, people and lessons that we have learnt from our wonderful family. They are our main support system. Friedreich’s ataxia has affected not only us. Our whole family is suffering too. Nonetheless, they remain as our pillar of strength and help us to be positive.”

Some common symptoms of ataxia are lack of coordination, slurred speech, swallowing problems, irregular eye movements, gait abnormalities, tremors, heart issues, etc. People with ataxia may have to use mobility devices for moving around.

Lack of awareness comes in the way of accessing the right medical support, something people like Zoyeb’s father, Ifthikar Zia are trying to change by talking about the disease.

“My advice to parents in similar situations is to build the confidence in the person, show him/her different options, show them other achievers and chart out a route for them to carve out their goals”, says Iftikhar.

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