We are very pleased to see this article describing a new DNA test which can be used to detect neurological disorders. Eileen, a patient at the London Ataxia Centre, was diagnosed with FA through this study.
See the Guardian article to read Eileen’s story. Prof Paola Giunti said “it is amazing to have the diagnosis of different ataxias facilitated by this new technique, which has been established also with the involvement of the London Ataxia Centre”
That’s great news
. Thank you for sharing x
I wonder how insurance is covering this. I am medically diagnosed with simply inherited SCA of unknown subtype, even though I come from a large family with a long history of documented ataxia.
Our research facility asked one of us in the family to get the Athena SCA panel done for them, at our own cost. I was the only one in my (large, and not poor) family to step forward. I was on my own, in my twenties, and I had no parents to help with the cost. I think it was about 5k before my insurance kicked in, which was a significant hardship at the time. And this was before the Obama years, when doing this also marked me with a pre-existing condition. But it was worth the trouble.
Many people are on their own, without a solid family history. Tests like these could be such a game changer if they are also affordable. Which they may be now, I have no idea.
This information comes from the UK, here testing is available via our National Health Service. This is paid for by deductions from earnings, and free at the point of treatment.
Contact your Neurologist for info…