Ataxia UK

 

Welcome to Ataxia UK. We are the leading national charity in the UK for people affected by any type of ataxia. We fund research into finding treatments and cures, and offer advice, information and support to people affected by the condition.

Ataxia… what’s that?

Any person with ataxia will hear this question a lot. With only 10,000 people in the UK who are diagnosed, ataxia is a rare condition; here, we explain what it is. You can find some examples of how to explain ataxia to others, too.

The Science Stuff

What is ataxia?
‘Ataxia’ is an umbrella term for a group of neurological disorders that affect balance, coordination and speech. There are many different types of ataxia that affect people in different ways.

Who gets ataxia?
Anyone of any age can get ataxia, but certain types are more common in certain age groups. For example, people with Friedreich’s ataxia are usually diagnosed in childhood or adolescence.

How many people have ataxia?
The ataxias are rare conditions. Estimates from recent studies say that there are at least 10,000 adults and around 500 children in the UK with a progressive ataxia.

Is there any cure?
Some forms of ataxia are treatable, but in most cases there is still no cure. We are supporting research and putting all our efforts in trying to get treatments or cures for the ataxias.

What causes ataxia?
There are many different causes for ataxia. It’s important to remember that ataxia is also a symptom of other conditions (such as MS). It can be acquired after head trauma or intoxication; many ataxias are inherited conditions caused by defects in certain genes.

The most common inherited progressive ataxia is Friedreich’s ataxia. Research is on-going to identify other genes which cause inherited cerebellar ataxias and discover how they exert their effects. However there are still many people who do not have a specific diagnosis for their inherited ataxia. These people would be diagnosed as having idiopathic cerebellar ataxia and there are many researchers focusing on finding new genes and new types of ataxias.

What can be done to help?
Join Ataxia UK free of charge and make use of our services and support. We will keep you up to date with the latest research news and tips on living with ataxia. You can join our local support groups, come to our events and much more.

You can read about different aspects of living with ataxia on our Treatment and Care page. You can also support us by making a donation, taking out a direct debit, leaving us a gift in your will, or raising money for us.

Explaining ataxia
One of the challenging aspects of living with ataxia is that many people don’t know what it is. Here are a few examples of how to explain it.

“I can look and sound drunk but I am not. I have a rare neurological disease that’s similar to MS.” – Litty

“It’s like trying to walk upright on a moving small boat” – Springlove

“Ataxia disrupts the messages sent to my nervous system; it disrupts my control over my body and my communication.”

THE OUTCOMES WE SEEK

Finding Treatments and a Cure
‘We are aiming for a cure for one or more of the ataxias’
Improving Care
‘We want to ensure the best possible medical and social care for people affected by ataxia’
Raising Awareness
‘We will raise awareness of ataxia’
Providing Support
‘Ataxia UK will provide services that meet the needs unique to people affected by ataxia (or that can only be effectively delivered by us), which will enable them to have the maximum possible choices on how they live their lives’

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