Being diagnosed with ataxia can feel daunting; it’s a rare condition, and many people – even some healthcare professionals – haven’t heard of it before. If you or someone you know has been diagnosed with ataxia, we’re here to help you with your next steps.

Below, you’ll find what support is available to you from Ataxia UK and advice from our community. If you’re interested in how ataxia is diagnosed, you can read more at the bottom of the page.

Support Services

First thing’s first: you’re not alone. Over 10,000 people in the UK have ataxia, and we’re in touch with a lot of them. If you’re looking for some guidance, advice or just want to talk to someone who knows what ‘ataxia’ means, we have a wealth of resources and support networks available:

 

Treatment and care

Read more about accessing specialised treatment and care, including our Specialist Ataxia Centres which have been accredited by Ataxia UK.

Become a Friend of Ataxia UK

Ataxia UK funds research into finding a cure for ataxia. You can stay in touch with what’s going on in the ataxia world by becoming a Friend of Ataxia UK, free of charge. You’ll have access to our quarterly Ataxia UK magazine (in print or PDF) that discusses the most up-to-date research, developments in the disability world, fundraising ideas and advice, and our monthly e-newsletter for more regular updates of the work that we do.

 

Our community

Symptoms of different ataxias can express themselves at different stages in life. We’ve included some advice from adults with ataxia and from some parents of children with ataxia below.

Tim is 63 and has Cerebellar ataxia:

It took me around a year to come to terms with my diagnosis. During that time I wanted to know and understand more and more about the condition; I was constantly thinking about it and it seemed as if an ‘ataxian cloud’ was hanging over me. However, after a period of time, I integrated ataxia into my life as a whole and it no longer plays the central role that it once did. Although I still have ataxia, a clear idea of the strategies that help me manage my ataxia has helped me to realise that there is much more to life after diagnosis.

Sheila’s son was diagnosed with Friedreich’s ataxia (FA) at the age of nine. He’s now 27:

Take one day at a time, don't look too far ahead, everyone is different, progression happens slowly, so your child will not change overnight.

Alison’s daughter was diagnosed with FA last year and is currently 13 years old:

Get support for yourself from wherever you can (as well as the child). Find someone who is good at listening that you can offload to if needed.

Pauline’s daughter was diagnosed with Cerebellar ataxia at the age of two and is now nine years old:

Encourage your child to remain as independent as possible. Get referral to neurology department. Push medical staff for what you feel is required.

Tricia’s son was diagnosed with FA last year and is currently nine years old:

Don't look too far into the future. The ataxia may progress slower/quicker than the information given. Have a positive attitude and make the most of good health/days. 

Pippa’s son has an undiagnosed form of ataxia. He is now ten years old:

Ask for help from the relevant people, and do it now. Shout, scream, until you are listened to. Ask questions and lots of them. Ask for time with the doctors without your child so you can ask questions that you feel uncomfortable asking with your child present. Give yourself a hug, give your child a hug and remember to be adaptable. Things change, so enjoy every moment you can; smile.