So I am sitting here reading all the blogs I have done and have never posted. I actually don't post most of the things I write for varying reason. The one thing I would really like to do is start a conversation about this condition, but it never ever goes that way. I often get this feeling that people who read these blogs, must think I'm an attention seeking whore. Nobody has ever said that to me, its just how I feel. Lately, I have done more research than ever, and I have joined a support group online which was suggested to me. Since joining the group I have learned so much just about my SCA and I hear from others about their triumph and obstacles. One of things that is repeated in the group is awareness. The awareness out there needs to improve. Try going to an ER and telling the triage nurse you have spinocerebellar ataxia, well as you know clear speech is not our forte. I have been trying to find out how many people, just in Canada have some form of Ataxia. The statistic is not really out there, a google search give you lots of FAQs and definition. but, nope no number. If you ask google How many people in Canada have heart disease, you get a summary right at the top.
So, this annoyed me and I emailed Ataxia Canada, they got back to me and this is what they said
The email goes on regarding other things but even for a guesstimate I almost fell off my chair. That's like 2%. It makes you wonder how many cases out there are going undiagnosed. Many people get misdiagnosed so this really brings me back to awareness. Everything is an obstacle to people with Ataxia and we just need to keep knocking those obstacles down until everyone listens.Hello Darrin,We do not have access to medical registry with patient information but for some scientific ESTIMATES THERE COULD be 16 000 ataxia patients across Canada on a population of 37 million ( FRDA, SCA of all types, ARCSAS,...).
Hi Darrin. Have you been given a variant of SCA?
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