Hello. Everyone
Can anyone tell me why Ataxia is. Never discussed on TV or the Radio. Today there was a really good program on Parkinson and I think we would all find some strength if people know or have heard of Ataxia
There may even be a well known Actor or Star who would be prepared to come forward if they are fellow 'Ataxians
Here's hoping. Ted
Hi Ted
I saw the chap who wrote The Vicar of Dibley on Breakfast this morning who has been diagnosed with Parkinson's Disease. It was a good piece.
Unfortunately Cerebellar ataxia is much rarer than Parkinson's. There are 6-8000 rare diseases, all of which, like us, are keen to get to a point where the general public have heard of them. Raising awareness of ataxia to the extent we would like is a hard job but one which Ataxia UK takes extremely seriously. Good progress is being made but there is still a very long way to go. It is essential that we all do our bit.
Best wishes
Harriet
As I understand it, there are approximately 12000 of us who suffer from one of 60+ variants of Ataxia whereas there are nearly 200,000 who have Multiple Sclerosis. (My wife was diagnosed with MS 29 years ago but is & has been in remission throughout). Consequently I am more au fait with MS than with Parkinson's but there are certainly parallels. Simply a question of arithmetic I'm afraid. While we would all welcome more recognition & help, I'm equally sure we would not want there to be more incidence of Ataxia.
No one had heard of Parkisons years ago when my father had it.Now I have CA it seems as if history is repeating itself. There is hope if we hang on.
Then it was Terry Thomas and David Niven with Motor Neurone. We need someone famous to be a spokesperson for the Ataxias. I know this gave us a lot of encouragement at the time.
Ive been saying this for years. Though I dont wish it on anyone, a famous face with CA would help spread the word I think.
But I suspect its being hidden because no one famous in the UK or USA seems to have it. Is this possible?I guess its bad for one's career. (No one even in the street seems to have it.) I am always on the look-out for gait disturbance, for example. Not that fame is a guarantee of a cure or treatment. MS is famous; so is Parkinsons--but treatment or a cure for either is not very forthcoming. My mother, age 91.5 has Parkinson's and today can barely walk, talk or eat. She used to be a super healthy person. Me too. N
you also have Andrew Marr who had a stroke this brought stroke to the for front for awhile about lack of understanding, i had a stroke which brought my ataxia on ,but Andrew Marr could afford private physio where as most people cannot, so enen though he has made it more spoke about it is a postcode lottery on what care you get
I totally agree. I have had ca since I was a wee girl. I have always looked up to famous people and it would be great to have some kind of role model because sometimes this condition is hard! But here is a thought if some of us just got together and done something that hasn't been thought of before and this won't be so hard as no one has heard of ca anyway! If we did something unique and shared that through social media, we ourselves would be role models. So if anyone out there wants to help us achieve that then contact us 😎
I agree with you. I live in Florida and most physical therapists never heard of ataxia. Also does anyone think that the kind of shoes you wear makes a difference in your balance?
We would be prepared to go to the papers to bring this to the attention of the media my partner is really poorly with this condition life is a big struggle !
Hi Ted,
I totally agree with what you are saying. The form of Ataxia I have is rare ( scar 12 gene) and it would be great to raise more awarness. Media would definatly help to raise awarness.
I am looking at doing a funraising event to help with more research in this condition.
We will get there.
Sarb
well done I agree its very frustating . the doctors do not understand. only being under sheffield has helped me.sometimes i had wanted to give up
I live in America. On quiz shows sometimes they have celebrities come on and play for their favorite charity. It would be nice to have some celib play for ataxia. That would help to raise awareness. In the meantime so little money is spent on finding a cure. I feel any progress toward ataxia will come because a treatment was found for another neurodegenerative disease and it just happened to be able to be applied to ataxia. I'm hoping for a cure, but if it happens, it ill be for another disease that could be applied to ataxia.
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