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

choreacanthocytosis

I was diagnosed with choreacanthocytosis last month & would like to speak with anyone else who has it

My older brother and older sister were recently diagnosed with ChAc too. I can speak for them if you wish.

I have NA...open to chatting anytime

My husband was diagnosed in 2013 we are based in london if you fancy a chat

Hi kathyrob I was diagnosed with choreacanthocytosis in march I think I'm the only person I know that can pronounce it & spell it! What neuroacanthocytosis has your husband got? I know there are 4 diseases associated with neuroacanthocytosis. I didn't realise that there was only 150 people in the world who actually have neuroacanthocytosis. I bet there's even less who have choreacanthocytosis

Hi mikek I was diagnosed with choreacanthocytosis in march. What neuroacanthocytosis have you got? I know that there are 4 diseases associated with neuroacanthocytosis & I think I have the rarest of all 4

Hello, Nicola-

I noticed your friendship request and apologise that it took some time to approve your request. Two days ago it was confirmed that I, too, have ChAc, with Generalised Dystonia and Parkinsonism. I also have Non-Epileptic Seizures and Narcolepsy.

This was finally given to me after 8 years of countless mis-diagnoses, so I understand the impact of being a part of a sub-type. You are not alone, and we are both in the UK! It is the rarest of sub-types that I am aware of, so I'm here to work through this together.

gingerirvine
moderator

Hi Nicola and all who are corresponding- delighted you are all wanting to speak to one another; thought it would be useful to reply to a few of the assumptions about chorea-acanthocytosis. It is actually the most predominant of the NA diseases and there will be more than 150 NA patients worldwide although it is difficult to say how many exactly as many countries do not share their information and as many of you patients know, it is difficult to diagnose so many patients may not yet know they have ChAc or another form of NA.
Let's keep sharing our experiences- Alex sends her best wishes to fellow patients. [email protected]

Hello, Nicola! How are you?

I do hope you are faring well. I'm doing my best. Some days are better than others, and I am taking care not to overdo things. That is a frequent challenge! Any plans for the holidays?

All the best,
Gary

Hi To All,

My wife was diagnosed with Choreacanthocytosis last year. It came about when in Oct 2014, she experienced a seizure for the first time in her life. After seeing a consultant Neurologist and having various tests, we were informed of the condition. I am trying to learn about the condition so I can provide the right support and care. Any advise and information is appreciated.

Best regards,
Noor