The Race to Stop It

The weeks following Hank's diagnosis were a whirlwind of doctor's appointments... a skull x-ray, consultation with the pediatrician, to the dermatologist for a biopsy of Hank's cheek tissue, down to see our naturopathic doctor, over to UCSF to consult with their pediatric rheumatologist and dermatologist...whew! Oh and then off to see a new dentist. In the first 4 weeks, we dragged the poor kid to 10 different doctor appointments. And although he liked getting out of school, we knew he was wondering why the big deal all of a sudden? His face had been discolored for a couple of years...what was the big hurry?
All the doctors agreed that Hank, did indeed have Parry Romberg Syndrome. But no one could tell us the cause...if it would just stop on its own...was it genetic...was it a type of Scleroderma... All we were told was that it was a disease of "unknown origins". That it was not was genetic, but might be familial. That it "burned out after 10 years" for some people. And that they weren't really sure if PRS is in fact Scleroderma or if it's a separate disease. And although the doctors tried their best to put us at ease and to be helpful, I wanted solid answers. I wanted someone to tell us, "Here is the cause." "Here is the cure."