Skip Navigation LinksHome > Support Groups > Discussion Messages
Muscles and Bones :
Fibrous dysplasia of the bone

Fibrous dysplasia causes bone thinning and tumor-like, fibrous growth on the bones. When this happens on the face or head, it causes visible deformities. Scientists do not yet know what causes it, and there is no cure for the condition so far.

This online support group for fibrous dysplasia will help you find fellow-travelers on what can be a lonely journey - meet other patients, their families, and doctors and find a compassionate online community for your disorder.


Join this Group



Add a topic Recent discussions
Start watching this topic
Fibrous dysplasia of the bone

Fibrous dysplasia (FD) of the bone is a peculiar condition that affects either all bones or a single bone in the body. Most cases are diagnosed in adolescence and young adulthood and remain unchanged throughout life. The initial manifestations of fibrous dysplasia are most commonly...Read More

Posted on : Friday, March 12, 2010 12:00 AM
Add reply       No of replies : 21

Report Abuse

You can help us in removing abusive content or spam.
Your Name
Your Email ID
(Maximum 3000 Characters)
I was diagnosed 2 years ago with polyostotic fibrous dysplasia. I would like to know if anyone with this is on disability because of it. I am in pain every day because of it.
Replied on Thursday, January 1, 2009 12:00 AM

My son had the problem in his right leg. The bone was removed [about 13 cm] and regrew.
Replied on Friday, September 11, 2009 12:00 AM
who was your sons dr? my daughter has fd in her right tibia. her leg is bowing more and causing more pain. thnx
Replied on Friday, September 9, 2011 10:23 AM
Yes, I have FD in my left hip that extends to my left foot and am on disability due to the chronic pain and muscle spasms.
Replied on Sunday, September 27, 2009 12:00 AM

I was diagnosed with polyostotic fibrous dysplasia as well when I was fifteen years old. Now, 3 years later the pain seems to be increasing. I am now looking for treatment to lessen the pain.
Replied on Wednesday, March 10, 2010 12:00 AM

I have recently been diagnosed with FD in my hand and more recently - it appeared within 2 years in my elbow. having surgery to shave down bone to release ulnar nerve......hope this ends it.
Replied on Friday, March 12, 2010 12:00 AM
Yes, I have FD in my left hip that extends to my left foot and am on disability due to the chronic pain and muscle spasms. Sadly many medical texts still do not acknowledge the severity of bone and muscle pain some of us endure from FD. There is a support group - FDSOL
Replied on Sunday, September 27, 2009 12:00 AM

Hi retired RN,
I too am a nurse with FD and I'm struggling with work and being on my feet so much because of the pain and muscle spasms. I have FD in my pelvis, and have been told several times that it shouldn't cause [that much] pain or the overwhelming muscle pain in both my legs. Some days aren't bad, but then I have flare ups, during which I can't work. I'm interested in hearing your experience.
Replied on Sunday, January 24, 2010 12:00 AM

The information on this page sounds like book knowledge as opposed to applied knowledge. I encourage FD sufferers to join the FD support group. Though FD is a bone disease we are born with as it is a GSA protein mutation that occurs while the fetus is developing in the womb, many of us did not have any symptoms [pain, fractures] until adulthood and therefore were not diagnosed until adults. This is a difficult disease to understand as it affects people so differently & with varying degrees of intensity & severity- both in symptoms and in response to treatments, such as Zoledronate acid or aredia infusions [bisphosphonates].
Replied on Sunday, September 27, 2009 12:00 AM
The following is a web site that contains info on how to join the free support group that consists of doctors, nurses, adults, and children who have FD with different degrees/intensities and much knowledge to share.

Your FD is in your pelvis- weight bearing bones. This is just common sense that it would cause extra strain on your muscles hence muscle spasms and increased pain. The most compassionate physicians seem to be oncologists- but know that radiation therapy can cause FD to transform our FD into bone CA. There are many things to tell you. Low pressure weather systems, menses, hormonal changes, can attribute to increased bone pain. Sudden weakness occurs and no one knows why, etc... If you can join the FD support group they are in general a very intelligent and supportive group. I pray this helps.
Replied on Monday, January 25, 2010 12:00 AM

I see here so many discusses about this diseases, but nobody found out a cure, or cause, or finding this problem in pregnancy period. I understand that a specific fibrous tissue of bone affect a normal bone. How is the structure of this bone, how can be detected with special machines, how to localize and detect with X-Ray or RMI or something else to surgery and cure for ever??? Genetic problem, but how to cure, and what is the root of this disease if nothing else than pollution and E-food? I'm interest if someone cured this disease and what he/she did??
Replied on Saturday, August 24, 2013 3:02 PM
I am 24 and was diagnosed with FD when I as 4 years old in my right Tibia, Fibula, and Femur just above the knee. I have had fairly persistent pain but about 6 months ago I slipped and fell off a roof and banged up my leg pretty bad. The doc took x-rays and said everything looked okay. Now three months after that appointment I observed a new bump on my Fibula where I banged my leg. Just wondering if anyone has any thoughts or experienced anything like this?
Replied on Tuesday, October 5, 2010 3:49 PM
Also, pain in the same area where I had banged u my leg has definitely increased even when i just am walking. I can no longer rollerblade without causing considerable pain.
Replied on Tuesday, October 5, 2010 3:52 PM

Member Sign In

Remember me
Forgot Password?
Sign up now

Medwonders has 234852 Members and 444 Groups.
Last Updated - Jul 09, 2020 - Designed & Content Managed by Medindia4u.com Pvt. Ltd.
Copyright © 2020 Medindia4u.com Pvt. Ltd. All rights reserved.