Couple of thoughts. This is an orphan disease, so named because there are few with this condition. with that in mind, the followings is submitted for your consideration:
There will be few real specialists in the disease. Find one.
Avoid any doctor who claims to have the “miracle cure” or treatment. There are plenty of scammers with MD after their names.
Get involved with an Internet group, but choose two or three to start with. Settle on the one with LEAST “off the wall” ideas.
Do not depend just on the net. Get a phone number and personally speak with anyone who you accept advice from. A lot of so called “lay medical experts” can write well, especially if they have a chance to edit themselves, but on the phone, sound like the scammers or weirdos they are. A few years ago, we did a story on some South American board-certified female physician who had discovered the cure for adult-onset diabetes. She was all over the ‘net.
“She” turned out to be a guy named Sid and have a 201 (Newark, NJ) phone number. Sid had been thrice convicted of mail fraud.
Good luck.
Good advice mindbender.
Good advice mindbender.