Since posting my first rare disease day post, only six days ago but it feels like a lifetime, many people have contacted me. Some of been telling me how they were impressed by my honesty, or bravery, or even my sense of humour (I actually like getting praise for that one!); some were giving me their thanks for putting words to their feelings; others were grateful because they didn’t feel alone in what they had gone through, or were still going through; then there have been the people who’ve contacted me to let me know that they have something to say as well.
This is one of those:
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“Rare Disease Day -29th February”
On this day we mark the day and recognise the outstanding, but “overlooked” issues that citizens with a Rare Disease are faced with on a daily basis.
Events Worldwide, on local, regional and International are taking place- and you can be part of this very meaning full day- just by taking part, you are raising the awareness of Rare Diseases.
There are approx 6000 Rare Conditions (possibly more) many of these are “invisible Disabilities” and go un-noticed by many people.
“Ataxia could be the most serious condition you’ve never heard of”
Ataxia is an incurable degenerative Neurological condition, it affects balance, speech and co-ordination.
I have Cerrebellar Ataxia a life limiting invisible condition that has made me give up my job as an electrician and rely on the care of my girlfriend.
I am chairman of Ataxia South Wales. A branch that covers a HUGE area, encompassing 6 health boards and 16 local authorities. We are a branch of National charity Ataxia UK.
We are based in the West of Wales, on the county boarder of Carmarthenshire and Pembrokeshire, which is very rural and this alone brings its own challenges. We have recently set up a support group in Cardiff to cater for the East Wales membership.
Having Ataxia is very frustrating, not being able to carry out the daily tasks, that you used to do, getting used to watching others do “your work” and relying on others, constantly, for your care and wellbeing.
I spend a lot of time using the computer communicate to others on disability or Neurological issues, this is made possible with many online facilities, facebook http://www.facebook.com/pages/Ataxia-South-Wales/112678352094257?v=wall#!/pages/Ataxia-South-Wales/112678352094257?sk=wall and “online” network Livingwithataxia.org , a International rare disease community which I moderate (this is just one of my online inputs, as there is so many, I think to keep an active mind and as mobile as possible to make life as normal as can be.
Ataxia South Wales is proud to be “spreading the word” about this “invisible” disability, on a local, national and international level with its attendance at many conferences including the Ataxia UK annual conference and the National Ataxia Foundation conferences in the US.
Ataxia South Wales chairman
Ataxia UK Trustee
Livingwithataxia.org UK moderator http://www.livingwithataxia.org/
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If you are affected by a rare disease, or you know someone who is, please feel free to contact me if you would like to share your experience on here as that would be more than welcome!