No. As I said, I don't know anything about this disease. Never heard of it before reading Jane's message.
What I do know is how to find INFORMATION about diseases and conditions. There are very few conditions for which there are not a multiplicity of treatment alternatives, some focusing on "cure," some on symptom relief and some on helping you live with a chronic illness and retain as much enjoyment of life as possible while doing so.
We are also living at a time when medical knowledge is increasing exponentially. There are many exciting new theories about all kinds of diseases and many clinical trials of various types going on.
I am also somewhat knowledgeable about the politics of getting decent care for elderly people, and what kinds of guerilla tactics the patient and his loved ones and advocates must often use to accomplish this, and how to minimize one's chances of death by
iatrogenesis.

Susan Guberman-Garcia, Attorney at Law. Phone: 510-792-2639
Fax/Voicemail:: 510-405-2016 Email: susangg@garcia.mpowermail.com