Fibrous Dysplasia Support Group

Fibrous dysplasia is a disease that causes growths or lesions in one or more bones of the human body. These lesions are tumor-like growths that consist of replacement of the medullary bone with fibrous tissue, causing the expansion and weakening of the areas of bone involved. Especially when involving the skull or facial bones, the lesions can cause externally visible...

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Endocrine System
/ Fibrous Dysplasia Support Group

pfd

deleted_user
deleted_user
i am a 44 year old woman and live in the uk, i have widespread pfd and have had my right arm amputated because of this dreadfull and dissabling disease, i am on a variety of strong painkillers, oxycontin, morphine ect and am hoping for a treatment called pamidronate very soon, i am having real trouble locating anyone else in the uk with this disease, i would be very pleased for anyone in or outside the uk to talk to about pfd, at the moment i have it in my ribs, pelvis and spine, although no doubt this will change in the future to include other bones, any information on any treatments or help would be much appreciated i look forward to hearing from you all.
deleted_user
deleted_user
hi juooles, I have responded to one of your previous posts already, however, I am willing to talk to you about pfd.

I am very sorry to hear of your illness, I didnt know it could get that bad so it is quite a shock to me.

I am 23, female, English but live in Spain. I was diagnosed last March when I had various tests as I had been suffering mild bone pain in my right femur. They operated last April to remove the growth, all went well but then I had a pain in my knee and after further tests they deteced another growth which was removed 2 weeks ago. I am worried I am going to have further growths and would like to know if I had any other growths in my body to be able to deal with them now.

Have hey operated to remove any of your growths? I have heard they can turn mailgnant, do you know if this is true?

I dont know anybody that has this disease either and can understand you can get very lonely.

Look forward to hearing from you soon.

Kate
deleted_user
deleted_user
Hi my name is lauren i live in the state of michigan in the usa. I am 21 now, was diagnosed 3 years ago. There are not many people with pfd, who have it in mulitple bones, but I am on pamidronate, i dont nottice a difference in my pain level but my tests results have showed that it is working to shrink some of the tumors. I also have the tumors in my ribs and spine 9 all together. Not many people have this disease so no one is willing to do research on it. I am in the process of raising money we need 50,000 to get a article in the medical journal then maybe someone will pick it up but in the meantime i see dr. henery bone out of detroit mi, st.john hospital. He is very good and sees a lot of pfd patients. There are really only 2 doctors in the world who deal with this correctly one in detroit the other is in switzerland.
deleted_user
deleted_user
Im sorry to hear about your right arm. juooles, we will all get through this. I was wondering kate you had surgery i heard the tumors will come back?
deleted_user
deleted_user
Hi Toozi,
Thanks for your response. I have also heard that they can return but im not sure. The specialist did not mentin this when I saw him but I will ask next time I see him. He did say that I may have it in other bones but if it is not painful then it is better to leave it alone. I am worried though as I had read that it can turn malignant, have you heard of tihs? My pain was not too bad and the treatment I have received is excellent but there are always questions and doubts that noone can answer.

I am quite worried to read juooles entry, I did not know it could get that bad.......

Speak soon Kate
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