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Carers UK Forum • Friedrich's Ataxia
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Friedrich's Ataxia

Posted: Thu Sep 04, 2008 10:28 am
by BigRob
Hello,

Just wondered how many people here are caring for a partner with Friedrichs Ataxia? Most people you meet in the street/bank/hospital/Government dont even know what it is. I'd never heard of it until I met my wife and yet 1 in 100 people are carriers (so our genetics counsellor told me).

There is some light in the form of new treatments but even when they are done testing them on students (mice have too many rights now) NICE probably wont fund them or it will be too late for us.

Just wondering

Rob

Hi Rob Hope things are ok(ish)

Posted: Sun Jan 04, 2009 1:10 pm
by Limana68
Hi Rob
Hope things are ok(ish) for you. My hubby hasnt got fredrichs ataxia but he has cerebeller ataxia, not sure which type yet, he is waiting for genetic testing as they believe he inherited it from his dad, but we are relying on the nhs so its been a very frustrating time for us with my hubby getting worse with his symptoms which are speech, balance, fatigue, , tremors, muscle aches etc etc.
have you been on the National Ataxia Foundation website? Theres a forum on there which is good and a specific one for frederichs.
Anyway, I ma about this forum is you need to chat, theres loads of support here.
Take care
Li