I am a 30 year old woman who was discovered to have sapho syndrome from the age of 8. It affected my right foot, distorting my toes and preventing a number of bones from developing properly, as a result i suffered with pain in this area at random or after excerise. It also affected my left left knee, which was often painfull to walk on. The worst part for me was that it was discovered in my left temple as as a result, it damaged the hearing in my left ear, leaving me with only 2% hearing ability here. It also caused issue's with my jaw and i have trouble opening it to full capacity. It was also affecting my left eye which would become very swollen and i suffered painfull headaches on the left hand side of my face. I was put on doxycycline from about 13 and although pain stayed with me till i was 20, i have been almost painfree for 10 years. My knee gets the odd pain but maybe only once a year, my foot has recently started to bother me in the cold, but my foot has much damage to it, after several ops and it appears to be as a result of the formation of my foot rather then sapho being present. I have been clear of sapho for some time, although i am to remain on doxycline (presently been on for 17 years)
as doctors fear the sapho will return without the medication. Doxycline has been a lifeline to me and has reduced so much pain and made life normal for 10 years.