AOA2, anyone out there with same or parents of? - Ataxia UK

Ataxia UK
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AOA2, anyone out there with same or parents of?

Hi all, my son, now 19 has been diagnosed with AOA2 with occular apraxia, it now seems my younger son, 13 has the same condition and is undergoing genetic testing for confirmation. We have an older daughter, 21, who thankfully seems unaffected. My husband and I have been confirmed as carriers. This has been, as for everyone on this forum I'm sure, a huge shock - we'd never even heard of ataxia before this. Is there anyone else with the same condition or parents of children with AOA2 who wants to chat? It seems this type is extremely rare so not finding much here on it other than years ago. Thanks and best wishes to all.

22 Replies
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Hi cocofrance

I am so sorry you are going through this. I can imagine you are absolutely beside yourself.

Ataxia UK has a closed Facebook group for parents of children with ataxia. Are you a member of this?

Harriet

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Morning, thanks for your speedy reply. No I'm not. I was aware but am worried about being exposed to things every day as at the moment I'm quite good at living day to day and not concentrating too much on the future, but it might be a good way to start. Is there a link?

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I completely understand where you are coming from.

In case you would like to join Ataxia UK (which is free to do) the following are links to the benefits of joining and the joining form itself.

ataxia.org.uk/becoming-a-fr...

ataxia.org.uk/forms/joinata...

To join the closed facebook group you would need to send an email to communications@ataxia.org.uk and they would arrange it for you.

Harriet

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okay thanks

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Hi my names Regina I have AOA2. I’m 26 but was diagnosed at age 19 with ataxia then it took about 4 years for the doc to find out it’s AOA2. My siblings seem to be not affected. My parents are also carriers and yes it was a shock to them at first as well as me as I didn’t know what was happening to me. I gradually started losing balance so now have been using a walker for 2 years. I’m now part of the At Society look it up they are a charity for children and adults with AT and do fun events and weekends! X

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Hi, thanks so much for your reply. I will look it up. If your parents want to message me privately and share experiences or if that would be great. It's so hard when it's so rare. Well done you for being positive, I'm sure that helps enormously.

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Thank you. We have to go into it with a positive mind and attitude. Yes it is very rare and extremely difficult at first as you don’t know what’s happening. How is your son coping? Where are you guys from? Sorry I don’t talk to my parents much I don’t live with them anymore and they’re not good at speaking English so don’t think they will be able to give you any advice.

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ah okay. We are in France, luckily a very good health service here. Do you work, are you able to?

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I do volunteering at a charity organisation in a office. I wanted to work but i thought might be difficult for me as I’m not very good at time management etc but I did used to work before my ataxia

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What did you used to do?

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Worked in a supermarket at 16 and then worked at a card shop at 18. X

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Do you work ?

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I don't have a full-time job currently, no

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Will you be coming to the Ataxia UK conference in October?

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hi we won't but maybe next year. my son, Laurence, was diagnosed while at lycée to train to go into the restaurant industry, that's where his lack of coordination first got picked up. He then tried to retrain as an apprentice plumber, had a great employer who was prepared to train him on the hope that at least for a few years he would be able to work, but after 17 months it became obvious that wasn't the best move. Now he's waiting to go on an 12-week course, for people with all types of disabilities, to try and get him into work. He's only 19 and really does not want to sit at home all day, not good for physical or mental health. Will keep you posted.

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When is the conference? I have another ataxia event to go to so I don’t think I will be able to attend

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October 5th

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Ok

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Hi,

I have AOA2 and I was diagnosed at 19, I'm now 30. Feel free to send me a message anytime.

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Thanks so much. Where are you and how is treatment? Do you work? We are in France and have great healthcare but just so frustrating being offered nothing apart from physio. He has had to stop his apprenticeship and is awaiting a course to try different jobs to find a fit. Just double whammy with our second son having the same condition… Sorry for brevity but off out shortly. Nice to know there are people out there willing to share experiences.

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I am from the UK, we have great healthcare here too. I see a top neurologist every year who monitors me, but there's currently no treatment.

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