Hi everybody,
I am a new member and a suffer from RFC1CANVAS.
I their are any RFC1 suffers out there and want to talk about this subject, I would welcome any interaction/communication.
I am happy to talk about my primary issues and worry's, and listed to yours.
I am also keen to learn anything I can about RFC1CANVAS.
🙂It is rare but…there have been other mentions….going back 9 years.
See the search box (top left)…type in Canvas. Then look to the right of this page for Filter Results…click on AtaxiaUK.
🙂You should see links to previous discussions.
hello. I learned today that one of my RFC1 genes is “expanded” - a repeated sequence of base pairs that shouldn’t be there.
However both copies of the gene should be abnormal for Canvas according to my neurologist. He is checking whether there is a different gene variant on the other of my relevant chromosomes.
I’ve had 13 seizures and a bad case of vertigo, both individually requiring 4 week stays in hospital. Balance off but improving a little. Severe neck pain and headache affecting sleep. Managing seizures with Lamotrigine.
Had a variety of diagnoses, the last being late onset epilepsy. It’s also been called potentially stroke, Parkinson’s, degenerative brain disease. CANVAS is a new potential reason! I’ve tried to research heterozygous versions today. It seems that they do exist but rarely so I’m not sure if this is a correct diagnosis or not. It seems a coincidence however to have one of these abnormal genes. Either way, according to my neurologist I should “adapt to my new circumstances as best as possible” as there is no specific treatment.
I’d be happy to chat online if you’d like to compare notes.
From a fellow RFC1 sufferer I feel for you.
It doesn’t help much when they say you must adapt to your new situation.
What was that saying, walk a mile in my shoes.
Hi,I'm also a Canvasser. Finally got diagnosis in 2021, onset in 2014 at just 42. Had cough since I was about 25. Cough eased a bit once neurological symptoms started but has got worse with mild dysarthria. Most annoying issue is fatigue, need to sleep in afternoon. Neuropathy annoying but not too painful. Still walking with stick but needing more help over last few months. Love yoga and try to get out for walks, do some gardening. As ataxias go Canvas is one of the better ones to have, I think. Tho we all seem to be quite different.
Liz
Hi Liz, Good to hear from you. You are the first person I have had any contact with that has RFC1. I was diagnosed in 2024, onset 2015. Cough didn’t develop until 2022 but is a problem now. I cough so much I burst the blood vessels in my face. The Respiratory Clinic say that at some point in the future I may start to pass out whilst coughing. Not looking forward to that. I have other neurological problems, my peripheral nervous systems has failed so I use a stick at home and where I feel safe, but use an electric chair elsewhere. I only know of one other sufferer, and that is a chap my neurologist diagnosed nine months before me. Apparently RFC1 is not very common. My wife and I holiday via cruises as that is the best way to give me the independence I want. I would love to communicate with you more to understand you story in the way your symptoms developed and how you cope. Kind regards. Derek
Hi Derek, I am a fellow CANVAS victim! I am 71 and had peripheral neuropathy symptoms when I was 52. Nerve conduction tests confirmed PN. A cough since my late 20s. Sensory ataxia started when I was 63. 5 years ago my consultant told me I had sensory ganglionopathy Although I was walking with a stick he told me Id eventually need a wheelchair and should discuss moving to suitable accommodation with my husband. The CANVAS diagnosis came after genetic blood tests in 2022. I inherited the recessive gene from both my parents. I have continued to do my best to stay active. I do zoom yoga and zoom tai chi now I can no longer go to live fitness classes. I have been using a 4 wheeled Walker to walk outside on accessible paths for the last 3 years. I felt I was doing ok until 2 years ago when the cerebral ataxia started getting worse . Also I gave up driving because I couldn’t feel my feet on the pedals well enough to be safe and I had lost confidence in going out on my own. Giving up driving meant giving up my independence and is really hard. We are moving to a suitable bungalow soon but I wish we had done it 5 years ago when I was steadier on my feet and had more energy. Stay positive, plan for the future and enjoy your holidays!
Hi viv112,
So much of your journey has similar aspects to mine.
The age, the cough, peripheral neuropathy failure, numb feet.
Like you I use a walking stick when I am familiar with my surroundings, but I use an electric wheelchair in unfamiliar surroundings and when my stamina is low.
I still manage to drive, but I get my driving skills assessed at my cost by an independent driving testing organisation, so I know I am safe to drive.
You come across as very positive and I take inspiration from that. Thank you.
I get a lot from talking to other people and understand that I am not alone.
Thank you and I hope we can talk again.
Kind regards.
Derek
Hi Derek
I agree it is good to talk to others. I haven’t met anyone with CANVAS or even ataxia. I talk to people who use mobility aids like myself and compare experiences and find that very useful. I don’t think other people or even neurology doctors understand what it is like to have neuropathy or ataxia or nerve pain if they haven’t experienced it themselves. I can’t walk with sticks anymore and can’t drive so it isn’t easy to meet other people. But we have to try and stay positive!
Hi viv112,
Totally agree with you.
I have done a lot of research in the RFC1CANVAS stuff. My GP, who is brilliant and supportive, is doing as much research as she can and we are pooling our knowledge, which is not much in the scheme of things.
I live in the Milton Keynes area and as you know I still drive.
If possible, I would love for my wife and I to visit so that we could talk and swap notes.
I am thinking writing to the moderator of this platform to ask if there is a way to make contact with other RFC1CANVAS sufferers. What do you think?
Kind regards.
Derek
Is experiencing occasional periods of depression a normal reaction to having Ataxia?
What's next? 
Going out of my mind!
New Job
Relatively new to Ataxia
