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 deformities.

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  • FDKyote

    Transgender and FD

    Hey all. My name is Kyle, and I was diagnosed with FD at 3 years old. I was lucky enough for it to present in my skull near my occipital lobe. Compared to what many people with FD go through, it was relatively easy to live with. I had it removed when I was 10 via split-skull craniotomy. I am now 22 and am hoping to start going through hormone therapy to physically transition to male. I know FD...
  • sunsetdreamer

    Reaching out to you...

    I am a 24 year old female and have recently been diagnosed with Fibrous Dysplasia in my right lower jaw/mandible. I would like to reach out to those in a similar situation to offer my support and receive support too. I am keen to discuss possible triggers of Fibrous Dysplasia in adulthood in terms of common denominators in our recent medical history.Please add me as your friend to connect...
  • db1975

    FD in optic cavity and temporal bone

    Hi all-Im a 41 yo female diagnosed with FD at 38. To my surprise, a CT scan showed a large amount of growth, likely starting in my teen years but only noticing now. My left eye is bulging and I have a bump on my temple. I am not in pain, but sometimes discomfort, pressure, headaches, and my eye is always dry. I am very self concious about my appearance, although it is not noticebale to everyone,...
  • Nandi

    Any surgery that helps with the headaches??

    Hi there everyoneI was diagnosed with FD seven years ago.I get really bad headaches and have a constant sinus infection.My FD is in my spenoid bone.None of the doctors think that the FD is the cause of my headaches.Recently my headaches got much more intense and I get it every day.Scans also show that the FD had grown a lot.Is there anyone who went for a surgery that helped with pain relief??Hope...
  • darlenehamilton


    Has anyone had the weather effect their pain with fd? I seem to be worse on rainy days.
  • Patty017

    Newly diagnosed

    hi I have been recently diagnosed with FD in several areas. My right hand and arm are dominating the pain, the pain is spreading to my knee and left ankle. Can some one give me guidance. Thank you 
  • holeybones

    polyostotic fibrous dysplasia

    Does anyone else have pfd? Does anyone know if you can get disability for it? The only thing I really know is that it will never get any better and it could get worse. I am already having pain, and am on mild pain pills.
  • madu3

    Pain management

    Ive got FD in my lower right leg. I got diagnosed with it last year. Had been getting some major 'shin splints' before suffering a horror injury playing football (soccer). After several surgeries I was going through rehabilitation to get back to full fitness, and was trying to push through the pain. I thought it was just from the surgery and I needed to push myself to break through the pain...
  • michellewadds

    Multiple Surgeries

    I'm so happy I found this group! I have FD and have had multiple surgeries. 4 surgeries on FD and 2 related to complications from surgeries. I feel like my family and friends without FD don't really understand what it's like. Has anyone else had surgeries? I saw some posts about the FD on the forehead pushing the eye down a few mm. Has anyone had this corrected? My FD is on my forehead above my...
  • deleted_user

    fibrous dysplasia of skull - surgery advice please

    Hi Guys, I've had FD in around my eye and head for years now and have recently finished the process of having it biopsied, scanned etc.The growths affect several of the bones in my skull and orbit so having them completely removed is an option that the doc's don't recommend. Because of the deformity they have caused though, there is the option of having them shaved down.Has anybody had this...
  • deleted_user

    fibrous dysplasia and birth control

    My 17 year old daughter has fibrous dysplasia in her optic canal. She gets yearly cat scans. So far the dysplasya has remained stable.She also gets migranes and we believe they are related to her monthly cycle. The neurologist said there should be no issues with the fibrous dysplasia and birth control but it seems as if its a bad idea. Has anyone had any experience in this area?Thanks so much for...
  • Superchick2012

    CT scan

    I was diagnosed with Fibrous Dysplasia six months ago and i have a CT scan coming up..i'm scared of what there gonna find..cuz idk what there gonna be looking for..can anybody help me understand this disease better?
  • deleted_user

    fibrous dysplasia in the lower spine

    Hi My daughter was diagnosed with this condition in the base of her spine 18months ago. She is now 18. She has days when she cant get out of bed but the doctors have told her that her growth has nothing to do with the pain she suffers with and that the growth is not causing her any pain. They have even implied that the pain she experiences is in her head. Her legs have now started to go numb...
  • deleted_user

    can some one recommend an FD specialist in Austral

    hi everyoneMy 23 year old daughter has FD in her humerus, she was diagnosed a year ago. It causes her some pain, she is about to start biphosphonate treatment and has been advised that surgery is not an option unless it breaks.We would appreciate a recommendation of an FD specialist in australia.
  • My 16 yr old daughter has fibrous dysplasia in her right humerus bone. She is in chronic pain and we are on our way to see our FOURTH dr with no tx yet for the pain. Pain pills won't touch the bone pain. The drs want to do IV Bisphonates on her but we are weeks away from starting that bc we need to see one more dr that specializes in that. My questions is, has anyone ever had FD in the arm and...