CANVAS

[Oroklinibabe]

Hi

I’m a CANVAS sufferer , anyone else with that “label”

[wobblybee]

I was tested for the gene, and told ‘it appears you are not positive’. There has been mention of CANVAS diagnosis on a Facebook ataxia support group.

[17KGB]

Hi!

My mum has CANVAS. I joined this group when she was first diagnosed in the hope someone else with CANVAS may be able to shed some light on their experiences and treatment.

We are in Australia and she’s the only case any of her doctors have seen.

How are things going for you?

[Oroklinibabe in reply to 17KGB]

Things are going ok . I was diagnosed about 8 years ago. I’m still walking ( with a walker )and I’m still able to make myself understood when I talk but things are getting worse. Ive found lockdown with Covid hasn’t helped things. Canvas is rare, but it’s getting more diagnosed as time goes on . Tell your mum I’m happy to converse with her . It’s nice to have a kindred spirit.

[17KGB in reply to Oroklinibabe]

I’m sorry things are getting worse... Covid has been a really tough time. I’m sure mum would be happy to chat to you. Please feel free to private message me with your email and I will pass it on to her!

[1940girl]

Hi, I have CANVAS, was diagnosed last year after genetic testing confirmed this. It took 6 yrs to get diagnosed, and am not doing too bad. My local neurologist had heard of it but knew nothing about it as I am the only case she has come across. Hope things are not too bad for your mum.

[Oroklinibabe in reply to 1940girl]

Hi, I was diagnosed about8/9 years ago, like you I was a long time getting a diagnosis because it is so rare.

[1940girl]

Hi, I had never heard of it before, it is so nice to be in touch with other people that have the same thing. I assume you have neuropathy as well. I don't really understand what the vestibular areflexia part is as no one has ever explained it to me. I was told this is a slow progressive condition, have you been told the same ?

[Oroklinibabe in reply to 1940girl]

Hi I was told it’s progressive but I was told I would be in a wheelchair and bad speech within 5 years . Well I’m way passed this !

[1940girl in reply to Oroklinibabe]

So glad to hear that, this is quite a scary condition and until now I haven't come across anyone else with this, I try and do what I can to keep active , but with poor balance and being dizzy it can be quite a challenge sometimes. It's so nice to be able to talk to others that understand.

[Oroklinibabe in reply to 1940girl]

I don’t get dizzy , I just lose my balance. Which means I can fall without notice. At least if you get dizzy you can have a chance to sit

[1940girl in reply to Oroklinibabe]

Hi, unfortunately I am dizzy all the time so in a way I am used to it, but on the other hand I will never get used to it, if that makes any kind of sense. I have only had one fall, so consider myself lucky. Are you still able to work. Have a good day.

[Oroklinibabe in reply to 1940girl]

No I don’t work but I couldn’t now anyway