My first symptoms showed up at about 4 or 5. Alopecia and skin discoloration. Slowly it progressed and at about 10 My parents began the search. I was officially diagnosed at 12 by doctors at UCLA. I was then sent to UCSF and went through several team...
3 people with Parry-Romberg syndrome / Progressive hemifacial atrophy have taken the SF36 survey. Mean of Parry-Romberg syndrome / Progressive hemifacial atrophy is 1640 points (46 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey