Hi Hermit- I'm so sorry to hear you are dealing with this rare disorder. I'm sure you've researched it a lot, but here's a link about it (from many different resources including the NIH (National Institutes of Health), National Library of Medicine, Mayo Clinic etc.) that might prove useful.
Have you considered entering any clinical trials? The NIH is recruiting all the time for this disease. http://search.nlm.nih.gov/medlineplu...X=500&ASPECT=0