Georgia has Friedreich’s ataxia (FA). Living in Hartlepool, her closest Specialist Ataxia Centre was Newcastle, but then it closed. She shares her story here.
I was diagnosed with FA by accident when I was 15 years old. I went to a podiatrist to get insoles to make my shoes comfier and they thought my balance was ‘off’, so referred me to a genetics clinic.
When I was first diagnosed I was referred onto the Genetics Team at the Newcastle Specialist Ataxia Centre (about a 50-minute drive away, so incredibly convenient for me). I had a neurologist who knew about ataxia, but unfortunately I didn’t see her often. I found having a neurologist helpful as she could refer me to other doctors when I had specific problems.
My neurologist left Newcastle over a year ago, leading to the closure of the centre, and since then I haven’t been given a new one. Despite voicing my concerns, I have just been told I don’t need one and to use my local GP.
I now attend the London Specialist Ataxia Centre and I love the people there! However, the challenges are huge: it’s costly and a long travelling time of at least five hours. Travelling to London disrupts my already busy schedule; managing my ataxia, going to other healthcare appointments more locally, weekly personal training and physio appointments, as well as attending university and trying to maintain my social life. This makes finding time to go to London difficult, and can result in missing out on other important things.
The virtual ataxia services would make my life easier. If there was something wrong, I could speak to someone about it without having to travel to London. It would be cost effective and time effective for me.
Accessing specialist care for people like Georgia is a challenge. Not everyone has the capacity to even do so. Donate towards the Big Give during the 3 and 10 December 12pm and you can transform lives with a pilot to virtual ataxia services. Donate here!
