Ataxia Support

How rare is this?

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

:thinking: 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!

Most doctors do not remember reading about ataxia disorders in school. Rarely do you even come across a neurologist who has experience with an inherited or acquired ataxia.

The best you can hope for is a smart, humble doctor who will care enough to read up, and LISTEN to you.

1 Like

How rare is it to have 2 neurologists disagree about your diagnosis, I wonder. I’ve had 3 stroke like episodes, (slurring badly, couldn’t walk) since Feb, the 3rd time, was admitted to hospital, and hospital neuro diagnosed “ataxia”.Then my own neuro, whom I had seen about balance problems and vertigo, said “no” it is not ataxia, and not a stroke and not a brain tumor. (I am 78, quite fit). I found out here, that coffee, especially on an empty stomach! and alcohol are triggers. My neuro said he would do some research. (I live near Toronto Canada). There’s a fb group, but no response so far. thx, Clare

An MRi to R/O any brain tumor and see cerebellar size. Blood tests for ataxia genes will further help with the diagnosis.

Thank you very much!

:thinking: If you feel the symptoms worsen as in ‘episodes’, and you feel triggers such as alcohol and caffeine can effect you, it is entirely possible that you have an Episodic Ataxia. But it will take an expert Neurologist to diagnose this (my symptoms are consistent with EA, but I don’t test positive to any current types) and differentiate it from other Ataxias.
It isn’t unusual for Neurologists to disagree, they each have their own areas of interest and expertise.

Dear sir:
I was the individual that wrote to you requesting an article on Ataxia. You did NOT print my entire letter but also edited out the most important part! Please do not edit this letter but print it in its complete entirety. I have had Ataxia well over 50 years so I do know something about it. I read the replies in the current Letters to the Editor section and they were true. But let me go a little farther. I think you need a little education since ataxia is not rare as was pointed out. Your article was about ataxia and not Ataxia. Ataxia with the small “a” [ataxia] is the symptom while Ataxia with the capital “A” [Ataxia] is the illness itself. The illness itself IS very rare. The illness is what your article should have been about. Please make the correction.

Thank you for your explanation of ataxia vs. Ataxia. It makes perfect sense!

I’ve had Ataxia cerebellar since the age of 18 months old I’m now 49. My ataxia is progressing as i get older. I feel general public and medical profession understand how isolating it feels to have a rare condition. Sometimes it makes me feel like a freak as I have lived with ataxia for so long.

Relax, you’re not a freak. I was born with SCA and I’m barreling towards birthday # 47 with a fairly optimistic view of how long I’ll be here.

Thank you. I only feel delicate this week as my team leader has made a big thing about my disability. Its definitely other people and lack of sensitivity which magnify everything :heart:

Just keep in mind that that’s the kind of stuff that fuels lawsuits…not a suggestion, but definitely a “keep in the back of your mind” kinda thing. I used to get all kinds of criticism and flack about slow and clumsy performance in the workplace before I ever got diagnosed. If I had known then what I know now, you bet your ass there would have been a discrimination lawsuit :slight_smile: