I also have heard it is rare unfortunately. Of the 5 possible symptoms, she has 4. She is soo miseragle most of time, but still keeps on going to work and she also interns at lab to be ultrasound tech. She is only 27 poor girl. She gets ulcers everywhere inside and out, even in her eyes,. She has bersitis in hip and pain in back and almost every joint at different times. She has severe IBS, gastric throat reflex (?unsure of name) and a weakened immune system therefore has had colds so bad they turn into pneumonia. Her teeth have been developing abcesses so bad she needs to have root canals followed by crowns. We're hoping this is a bad flare up and will settle down soon. Apparently it comes in waves and sometimes never really comes back. She has been battling this for about 7 yrs. She goes to at least 3 docs for different parts of syndrome and also needs to go to dentist and eye doctor. I pray this ends soon. We worry so much about her.