I would love to hear from others that have this condition
I know it is rare but I am sure I am not the only one on this site with it.
PLEASE reply............let us support each other!
I would love to hear from others that have this condition
I know it is rare but I am sure I am not the only one on this site with it.
PLEASE reply............let us support each other!
Hi Laura, I am very familiar with ataxia. My son, now 12, was incorrectly diagnosed with Freidrich's Ataxia a couple years ago. At that time I found a Yahoo! group of ataxians, because I wanted to get as much info about the disease as possible, as well as find out how they feel, how they cope, etc. with many different types of ataxia. The most common in that group seems to the the SCA's. Although I am able-bodied myself, I still feel very welcome there, and that might be another on-line group for you.
If interested, you can go to www.Yahoo.com, click on their Groups. The name of this group is u_r_notalone, and you can type it in the box just like that. There are many other groups under the topic of ataxia, also.
Perhaps I will see you on-line again.
Kelley
Dear Kelley
Thank you for the reply and information.
I will go to yahoo and hope to chat with you.
Your son is blessed to have a loving caring mother who is in search of information that may help him.
Thank You again
Laura
I found information regarding all types of ataxia under NORD. The organization of rare diseases. I have a friend who was diagnosed with a form of ataxia in June. Life has not been the same for him ince. He has basically cut me from his life. I miss him a lot, but I will say that I cannot imagine how he feels right now, so I have deceided to back off until he is ready for me to be in his life again. It hurts to me that he has chosen to eliminate me like this but he has to deal with this in his own way. Hoping that he still knows that I am here for him always.
Add to the discussion