I was diagnosed with LPHS at the age of 16, I am now 18. Luckily I didn’t have to go through a lot of doctors, my mom also has LPHS. She knew exactly what needed to be done. LPHS has changed my life so much. I can’t do the things normal teenagers do. Because of my age my doctor won’t give me any pain meds that work, just tylonol 3.
Besides my mom, I don’t know anyone who has this. When I found this site today it made me feel less alone. Less of a freak.