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What is ataxia?
‘Ataxia’ is in fact a whole group of different conditions affecting the nervous system; there are dozens of different kinds of ataxia. The first signs are usually quite similar. Ataxia affects your balance and co-ordination. This can change the way you walk, talk and write.

What happens to people with ataxia?
Your walk may be wobbly and you may find it hard to write neatly. Speaking clearly, without slurring, might become very difficult. You may find the effort of trying to balance and control your body makes you very tired.

What happens after this depends on a number of things, including which type of ataxia you have. Some ataxias are progressive, meaning that symptoms get worse as time goes on. This is usually a gradual process, and takes place over a number of years. You may have to use a wheelchair.

Why do I have ataxia?
Some ataxias are inherited. You can inherit ataxia even if neither of your parents has symptoms of ataxia. This type of ataxia is generally recessively inherited. The most common example of a recessively inherited ataxia in the UK is Friedreich’s ataxia.

Sometimes ataxia is due to a viral infection. With this kind of ataxia, people may get better.

Then there are some ataxias where we have not yet discovered a cause.

Will I get ataxia if someone in my family has it?
If someone in your family has an inherited form of ataxia, you have a chance of inheriting ataxia too. The statistical chance depends on whether the ataxia is inherited 'dominantly' or 'recessively'.

What can help?
At the moment, there are no cures for the ataxias. But some things can help for some symptoms. These include:

Medicines, as prescribed by your doctor
Physical exercise; a physiotherapist can recommend different exercises to keep your body strong.
Regular visits to a qualified speech and language therapist to find ways of coping with speaking and swallowing (eating) difficulties
Support from family, friends and other people (see Meeting Up)
Some young people find counselling helpful.

As well as support from my family, two things in particular helped me to come to terms with the diagnosis of Friedreich’s ataxia. One was counselling, provided by the Local Health Authority, from a person whom I respect very much. The other was doing a college assignment in Communication Studies about public opinion of disability. I wanted to find out what teenagers think of disability and how much, if anything, they know about Friedreich’s ataxia.

Although it was a painful process at times, I realise that I have a lot of opportunities in life. Overall, it helped me to become a lot more positive.

Becky was diagnosed with Friedreich’s ataxia when she was 16

Making Contact

It is easy to feel alone. You may be the only person you know who’s ever heard of ‘ataxia’. If you cannot get around easily and speaking clearly is difficult, you may feel left out of activities. That’s why you may find it very helpful to meet other people affected by ataxia – either face to face or over the Internet. Suddenly, you’re not the only one. And other people might have answers to some of your questions and problems.

Whether you’d like to get involved or you’d rather stay on the sidelines, at least for the moment, it’s worth keeping an eye on the websites for people with ataxia. You’ll find out what’s going on and maybe you’ll make some friends.

See Meeting Up and Links for more suggestions.

Kidsmart has a good section on Internet safety.

If you want to see your story, poem, ideas or review here, email alex@ataxia.org.uk.

Helpline: 0845 644 0606

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Making Contact