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Ataxia Support Network

AOA2. Ataxia friends


#1

Hi, I’m Canberk from Turkey. When I was 16 I was diagnosed with ataxia. Doctor didn’t say what type of ataxia. When I was 19 we went to Germany due to appointment from Klinikum Tübingen. There’s a neurologist who specialized about ataxia. And after some tests and processes, he said me that this is AOA2 which is extremely rare type of ataxia. I’ve searched about it and prevelance of this about 900.000:1. So I’m the one. Now I’m 22 and graduated from university.
Please feel free to reach me:D
I need understanding people
Have a nice days :love_you_gesture::love_you_gesture::love_you_gesture:


#2

Yes, your kind of ataxia is very rare Clinical characteristics.

Ataxia with oculomotor apraxia type 2 (AOA2) is characterized by onset of ataxia between age three and 30 years after initial normal development, axonal sensorimotor neuropathy, oculomotor apraxia, cerebellar atrophy, and elevated serum concentration of alpha-fetoprotein (AFP).
Congratulation on your graduation. Keep an eye out for any new drugs that may come out of research.


#3

Hi Canberk,

STAY POSITIVE, ataxia whichever you have is a part of you, but don’t allow it IF POSSIBLE (sometimes it restricts you-accept it) , TO DEFINE YOU. We all have limits…What have you studied? Are you doing further studies (MA) or looking for a job…?

Good luck…


#4

I graduated from deparment of “nutrition and dietetic” but I am not looking for a job now.I am just writing a web-site about nutrition and searching information about it. İt makes me happy:D


#5

Canberk,

Good for you. stick to what suits you best…

ladybird


#6

Hi Canberk, I was diagnosed with A0A2 10 years ago. On a trip to the UK from my home town in South Africa. I started Ataxia South Africa and soon realized that talking to people, even Doctors the first thing they would say is Ataxia whats that. I work part time admin,and run ASA. I try to exercise as much as I can to keep the muscles strong. I am still walking, at home I hold onto the walls for support. I am also good at the bum shuffle it works for me. Congratulations on your graduation. Do what ever makes you happy. Stay strong Linda.


#7

Hi Linda. Good to work ASA. Keep going on exercise so muscles are really important. Thank you for support


#8

Hello and Welcome
Glad to have you aboard, this very knowledgeable community.
Indeed I have met many with AOA.

This short film will make its debut soon (I was invited to its first showing at the rare awareness film festival in Los Angelees - it is very moving.

Shared via Cindy Furton De Mint
** Last week to get your tickets to our documentary “We Are Strong” by RJHall Films!
6pm SOLD OUT but we added tickets for 8pm!!! We will have live music and a no host bar for charity
All proceeds will go to Brothers On A Quest to find a cure. **
#Ataxia #AOA #RareSpecialPowers

Alan