Neuroacanthocytosis (NA) Community

Meet, discuss & support other patients or families living with Neuroacanthocytosis (NA). Contribute to topics, or just share what's on your mind

I have NA

Hi there. My name is Mike and I was recently diagnosed with NA. My symptoms started 3 years ago ( fidgeting, problems walking, speaking, and swallowing). It has been very difficult for me and my family to come to terms with this news as I was for lack of a better word, a normal guy. I am now off work and living on disability. My friends and family have been very supportive and I take each day as it comes.

My swallowing problems are extremely embarrassing as I cant eat without food spilling out of my mouth. I find it difficult to socialize and date.

Are there others similar to me?? Hope to hear from you soon.

Mike

formerEURORDISstaff
moderator

Hey Mike,
I'm Rob, one of the community managers with EURORDIS. Thanks for joining and posting here. You can connect with others here: https://www.rareconnect.org/en/community/n...

If you see someone you would like to talk to, send them a friend request, after they accept, you can send them a private message through their profile page.

I also recommend you check out: http://www.naadvocacy.org/

Best,
Rob

Dear Mike,

Your experience is very similar to other patients who have symptoms three or four years old. It sometimes improves a bit. Different doctors try different medicines at different stages of the disease and deep brain stimulation has helped a number of patients. There should soon be an article by Francois TISON et al. in the Public Library of Science (PLoS) on dbs that your doctor will find interesting. Keep an eye open for it in NANews with directions of how to get to it.

Sincerely
Glenn
Ginger and Glenn Irvine
Advocacy for Neuroacanthocytosis Patients
32 Launceton Place
London W85RN
Charity registration 1133182

News and stories about NA in translation at
“Patients” Section at www.naadvocacy.org

Thank you Rob and Glenn