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

my kid' s

We found out that our son and daughter has the rare disorder called chorea -acanthocytosis. it's been hard to deal with the dropping of things in the middle of the night . And trying to understand what they are saying ! It's very frustrated to keep our cool and not yell at them.
Is their any one out there that has a child that has chorea - acanthocytosis ? how do you deal with it??

Tihana
moderator

Dear Rosemary, thank you for joining RareConnect!

my name is Tihana and I work with EURORDIS as an online community manager on RareConnect. As we have a community for Neuroacanthocytosis I moved your post to the Meet section of this community, so you can meet other people with experiences with Neuroacanthocytosis.
Feel free to ask questions here and also check the other sections of this community to read stories of other families and find interesting articles and information about Neuroacanthocytosis. In the Members section you can also find a map with the locations of other members.

louise_d
moderator

Hi Rosemary.
Welcome to the NA community. There are a few patient families among the members. Which country do you live in?
Best wishes, Louise