Welcome to Neuro Talk. I have heard of this, but not on this site. At the top there is a "search bar" if you type in BeriBeri, any information that this site would have would be there. I hope someone can help you with the information you need. There are alot of compassionate people on this site, and you are welome anywhere to talk to us. Have you Googled this condition as well? I do believe it is a rare disease also. I have not met anyone so far anyway that has mentioned this disorder. I do wish you all the best in your search for answers. A disease specialist may be another direction you may want to try. You will be in my thoughts and prayers. ginnie