This is a rare disease and there are no support groups to speak of. This will be one of the first
ones. Please feel free to sign the guest book
with your name, questions or comments.
The disease is endemic to the Caribbean, mostly Jamaica and in Japan, but it has made it's way
to the states with most cases in South Florida.
I have had the disease for 20 years, am wheelchair and bed bound and want to help educate and
be support for others involved with the disease.
I can help with questions and direct you to helps. Also can provide crucial information to help with daily living activities and special needs.
Please feel free to email me
[email protected]