International Ataxia Awareness Day 2024: Are you Ataxia aware?

Ataxia is a neurodegenerative condition which affects one in 50,000 people. This is Alan’s story, founder of a charity called Ataxia and Me.

What is ataxia?

Ataxia comes from the Greek word, meaning ‘lack of order’. People with ataxia experience problems with movement, balance and speech. Although ataxia is degenerative (and this very slow in my case), there is currently no cure for this life-limiting condition.

Rare conditions affect less than one in 2,000 people; ataxia affects one in 50,000! This means that ataxia is extremely rare, and it is difficult to connect with others who share lived experience of this condition.

My cerebellar ataxia diagnosis

I have walked with a wobble and spoke with a slur from an early age. Many people thought, “Oh, that’s just Alan!”. I also achieved good qualifications at school and went on to run my own electrical contracting business. However, as my condition progressed I soon found out that lack of coordination does not mix with electrical circuitry. Still, I persevered until I started to notice that menial tasks required more and more concentration – even buttering my sandwiches for work.

For many years, I visited my GP on numerous occasions who told me to take time off work and rest. One day, my usual GP was unavailable, and I saw a locum who had recent knowledge of ataxia symptoms. He referred me for more neurological tests and I received a diagnosis for cerebellar ataxia. The consultant explained the diagnosis, its outcomes and that nothing could be done.

A support network for ataxia

When I got home, I started to research ataxia in more detail and began to find that there wasn’t much helpful information or support out there. Whilst I receive some care from my local hospital, I have to travel to Sheffield to receive specialist ataxia care – some 258 miles away, and five hours by train!

That was when I established Ataxia and Me, a patient-led charity based in West Wales with a global following. Together, we share our lived experiences of this extremely rare condition.

If you are an ataxia patient or relative, carer, friend or healthcare professional, we invite you to support us in promoting awareness and sharing helpful resources. Just go to ataxia-and-me.org.

Alan Thomas

Founder of Ataxia and Me

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