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for Wales RareDisease Day reception 2014
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The word "ataxia", comes from the Greek word, " a taxis" meaning "without order or incoordination". The word ataxia means without coordination. People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech, and eye movements. Ataxia is often used to describe a symptom of incoordination which can be associated with infections, injuries, other diseases, or degenerative changes in the central nervous system.
I have not posted any update over a year. I actually have not experiance any progressive syptoms. I wonder why me. Although I still have my balance off It actually seems not as bad as it was lastyear. that weird. my speech is not slurred as much…Continue
Hello everyone,I am very newfrom last week. I speak with Dragon software, so there is a grammatical error, please ignore.I just want to throw at question out theresend someone in South Africa just posted this morning regarding a wheelchair.Does…Continue
Hi all I am going to order my new wheelchair tomorrow. A Rollability mk2. I am thinking of asking for Mag wheels, slightly heavier but easy on the fingers when rolling on my own. Any one have wheelchair with mag wheels are they a good choice.Thanks…Continue
Hey everyone,I joined the website today and went through several pages of posts and a lot of information, but had one question that wasn't answered. My mom has SCA 3, and so do two of her siblings (out of 3). Her mother also had it. I am worried…Continue
Hi there! My mom was diagnosed at 49 after many years of misdiagnosis. She is now 72, in hospital, had a feeding tube put in and her speech is hardly understandable. Her cognition is now at a point that it is hard to tell how much she understands.…Continue
I can't remember for sure but think someone mentioned that there was a female member on here with both dystonia and cerebellar atrophy. I'd really like to speak with her as my partner has been given a diagnosis for both of these. Warm Regards xContinue
Hi Everyone,Warren ( my partner) had his blood taken today in Ipswich to be sent off for testing at the Genetics Lab in Cambridge. The neurologist said it would take 2 months. We wondered why it takes so long. Any advice or experience of of length…Continue
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Rare Disease UK is the national alliance for people with rare diseases and all who support them. Members include individual patients and family members, clinicians, health professionals, researchers and industry. Rare Disease UK is campaigning for the development and implementation of a national plan to facilitate research and improve access to services and support for people affected by rare diseases in the UK.
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