AOA2?

[Laurabowerman1992]

hi. I was wondering if there are any other AOA2 sufferers out there? I would love to be able to connect with someone going through the same thing as me so I don’t feel so alone </3

[wobblybee]

Hi🙂 If you don’t already know about this..

atsociety.org.uk/how-we-can...

[WobblyWoman57]

Hi there, I’m sorry but I don’t have knowledge of your particular situation but I do know what it’s like to feel alone. I was diagnosed around 30 years ago, although I always knew there was a problem and SCA was prevalent throughout the family. Anyway, when the specific genetic mutation was finally identified - took many years - there were only 4 families worldwide with the same thing.

We live in an age of extensive communication and don’t get me started about the pitfalls of social media 🙄 but I’m glad there are sites like this one that show, whatever our individual issues may be, there are people who know what it’s like to be different. I hope you find some comfort in that because having someone to listen, more than anything else, is invaluable and the first step to feeling less alone. 🙂

[Laurabowerman1992 in reply to WobblyWoman57]

Thank you for your message!

It came as a big surprise to me as no one in my family suffers from it- I had to do a lot of googling which I’d dangerous (as I’m sure you have experienced)

I am so thankful that I am able to connect with such people and do find immense comfort in forums such as these. Thanks so much for reaching out 🥰

[WobblyWoman57]

Yes, I’m sure a bolt out of the blue like that would have knocked you sideways. And the internet searches can take you to some very dark places! It’s important to remember that whatever the overall picture for a certain problem might be, in terms of symptoms, other health issues, projected outcomes etc, it’s also the individual that matters and everyone is different so whatever is read, etc has to be taken in context. Remember you have your own context. You may be the only person with that context but you are not alone! 😊