i have pfd of the skull, i have pain but mostly thru headaches with it, i am taking ultram for that, my local doctors were clueless as to what to do for me so i have actually started going to uva for treatment, however i have not heard of any one getting disabitly unless they have severe deformaties or problems that made it so they could not function or work. i wish you the best and good luck.

i have had pfd for 11 years now, i am 44 , female and live in england , i have pfd in my spine, pelvis, and ribs, i also had it in my right arm very bad and tried unsuccessfully for 7 years to relieve my pain, i had my right arm removed in 2005 and have now een told that i have the disease through the other parts of my body, i am on very strong painkillers including morphine and am trying to get a drug called pamidronate, i now get dissability as i am unable to work and am in a wheelchair would love to here from anyone else in this unfortunate position

I am 23 and was diagnosed with Polystotic Fibrous Dysplasia last year after I had been suffering a mild bone pain in my femur. They operated in April 2009 to remove the growth/tumour and all went well. I then started to have a pain in my knee in the same leg and after further investigation they found another growth which they removed 2 weeks ago.

I am English but live in Spain and the treatment I have received here has been fantastic. The doctor has been very helpful and reassuring but I am worried I may have this in other parts of my body.

Does anybody know whether I should request a full body scan to see whether I have this anywhere else as I am worried if it is not dealt with now that I am young I might have problems laer on in life.

If anybody wants to chat just e-mail me.

I got disablity no problem cuz no doctor knows what it is, just try if you get denied then try again

Hi everyone, I am new here. Before today I didn't know that there was a support group for polyostotic fibrous dysplasia. I am from the United States. Please, forgive my spelling. I am dyslexic. I was diagnose with polyostotic fibrous dysplasia back in 1993. It was found in my face, nose, sinuses, my femur, hips and pelvis. Does anyone else, ever feel alone with it? Even though I have had it for 23 years, I still feel alone. When I was diagnose with it I lived in Baltimore Maryland three years after the diagnose, surgeries and told I would only life for a few years. I moved (I ran) to different state. I couldn't handle more painfully test. I felt like a test rat. I even had one doctor tell me, that if I lived to reach my 40's it would be a miracle. Anyway, since I have moved to NC I haven't seen anyone about my PFD. Lately, my headaches have returned and has developed a small bruise and a small knot on the right side of my face (yes, it is the same side the tumor was removed from. I think I'm just over reacting. Thanks for listening.