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

There is hope...

I have been treating a patient for 3 weeks, and it seems very promising

Hi there. I am a nurse studying Traditional Chinese Medicine. I meet a patient suffering from NA, and really wanted to treat him, as he seemed like a normal person, locked in a body foreign to him, with no hope at all. The neurologist had told him, that from here it would only decline. He was on different drugs for the attacks of tics and spitting involuntary. He came to our clinic, because he had been grinding his teeth, and developed a huge sore on his tongue, that should be biopsied. I started to treat him 3 weeks ago with acupuncture, and he is really improving. In our clinic he had his teeth fixed and got a night guard that helps him a lot. At first it was fitted for his lower teeth, but because he could not keep it in his mouth for long, because of the tongue movements, we fitted one for his upper jaw, which works very well for him. He sometimes seems almost "normal", with only few tics. He has had 8 treatments so far, and has been able to do many things that for a long time was impossible. He can pick up his daughter from daycare, care for her, and function close to normal. He needs half the drugs he used to take, and this is after only 3 weeks of treatment, 2-3 times a week. He also listens to relaxation soundtracks, which also seems to be helpful. So don't give up, there is still hope for improvement. I hope, that when he has gotten more treatments, that he will be able to go back to work...All the best to all of you...

Hello Jael, its been about a year since your post. Can you please provide an update? I am curious and excited! I can't wait to talk to my older sister and brother who were recently diagnosed with ChAc and have been sufering this condition for more than 15 years.

Hello Jael, I too am interested to know more. My spouse is diagnosed with NA.