People really don’t understand this at all. How rare is this?
I believe it varies a little…some types are rarer than others. SCA2 is approximately 2 in 100,000, though it’s more common in some areas, ie. ~ 7/100,000 in Cuba. In relation, Parkinsons varies from around 40/100,000 in 40 year olds to 1900/100,000 in 80 year old. ALS and Huntington’s Chorea are also pretty rare. Rheumatoid arthritis is around 40/100,000. I take every opportunity to tell/teach people about Sca…even doctors…as they can’t possibly know everything. Many years ago I had Graves Disease (hyperthyroidism—around 25/100,000) which my doctor, in a relatively small community , had never seen before. It was a learning experience for both of us.
I am a physician and I am interested in learning more. You could contact me directly at DLHFeldman at aol .com
There are estimated to be around 150,000 people at any one time in the US, and around 10,000 people at any one time in the UK. Ataxia is considered to be only one of approx 7,500 Rare Diseases. Unless someone attends a local Ataxia Support Group, NAF Convention or AtaxiaUK Conference, they are unlikely to meet anybody else with ataxia, apart from at Neurologist appointments.
Doree…I am not a medical professional, so you probably have access to more information than I. The National Ataxia Foundation (ataxia.org), hopkinsmedicine.org, johnshopkins.org, rarediseases.info.nih.gov, and CoRDS at sanfordresearch.org are all helpful sites. Any specific questions, just ask away, as there are lots of ataxians on here with varying symptoms and at various stages!