My daughter is 23 and suffers from PFFD. She was a Shriners patient until the age of 20. She received various suregeries to help with her length and up until a few years ago wore a 1/2 inch built up. For the past year she has began to complain of sever pain in her hip joint (which we were informed by Shriners, would eventually need surgery/replacement).. and has become quite debilitating. We live in Alabama and are searching for a doctor specializing in her condition. We have yet to find anyone.