hi im 22 and was diagnosed with sapho syndrome at 14 i have the condition all over my body many people get the condition in there collar bone and knees but im quite a rare little thing and have it on 70% off my body. ive got it in my jaw bone also my jaw locks occasionally and i cant open my mouth very wide. also ive had to have teeth removed as they were inflamed and im positive its all to do with sapho syndrome. i have had all treatment available and it has yet to work on me. i just take strong painkillers every day including cocodamol 30/500 tramadol diazepam naproxen. in the winter the pain gets worse and i feel so miserable i cant get out of bed. im worried how this will affect me as i get older. if there is anyone who has this condition i would be interestead to no how it affects there life. i also have polycistic ovaries,hidradenitis suppurativa,irritable bowel syndrome,blepheritis,ive had 2 mini strokes in the past and have had depression. has anyone else got these things and sapho syndrome. id be greatfull for a reply thankyou kerry x