Thank you for your guidance. We visited Dr. Torok in Pittsburgh. My daughter also got diagnosed with Parry Romberg and Juvenile Arthritis. I feel like we found the right doctor and am hopeful we are on the right path.
We are only 24hrs into this diagnosis and I am trying to wrap my head around what it means for her. I want her to see pediatric linear scleroderma expert. So many centers are for adults only. Is there a US Dr. who is considered to be a top expert in Peds? Thanks so much!!!