Taryn (left, in photo below) is 32 years old and has experienced wobbly symptoms since she was 17 years old. Living in Scotland, it has been a challenge for Taryn to access the appropriate and important care. Here she tells us about her story.
I was originally misdiagnosed with benign Familiar hypertonia. My mam wasn’t happy with this, so after a few years fighting, I saw a specialist at the Newcastle Ataxia Centre. Many tests later, suspecting Friedreich’s ataxia (FA), I was diagnosed with cerebellar ataxia (CA).
I attended Newcastle Ataxia Centre for many years, undergoing many tests. Then it closed. I was not happy, to say the least; I felt as though I had been thrown out into the cold, back to square one.
My family and I moved to Scotland and from there it spiralled downwards. I feel there is definitely a lack of support, specialists and understanding of ataxia in Scotland. Nobody here appreciates that you need multi-disciplinary care for a condition with such a variety of symptoms. People (including the Scottish NHS) in Scotland seem to think ‘one size fits all, so put up and shut up, accept what we allow you’!
I believe it’s very important for ataxia patients to have access to a Specialist Ataxia Centre as they provide support from knowledgeable people, on-the-spot access to world renowned experts and new research in the ataxia field. In short – I feel ataxia centres give hope!
Now that the Newcastle Ataxia Centre is closed, I don’t like travelling to Sheffield as it’s a long and arduous journey. However, I’m prepared to do it to see a world renowned ataxia expert and receive support and treatment of symptoms there. So, the testing of ataxia virtual services would be a huge help for those who cannot get to a Specialist Ataxia Centre. At least through a virtual clinic you can access support and advice. During the time I was cut off and denied access to an ataxia specialist, I felt so much worse, there is no one to help alleviate symptoms. I was at a loss!
You can help improve lives by donating towards the piloting of an ataxia virtual service, so people like Taryn have the option to access the care they need. Donate between the 3 and 10 December 12pm via the Big Give here! Thank you!