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Fibrous dysplasia of the bone

About Fibrous dysplasia of the bone

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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 found in persons aged 3-15 years.

In the past, many conditions that could not be satisfactorily explained have been included under this disease. The bone in this condition is fibrous or plastic in quality and is defective in form as well.


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Posted by:  sarajane(Guest)  Posted on: 11/19/2011
I was diagnosed with FD of the skull when I was 9. I am now 25, and since then I have had 4 cranioplasty's. My FD was surrounding my optic nerve and could have caused blindness. After my first 2 surgeries my FD started growing in a different direction..towards my brain. It has been a very long road and alot of suffering for my family and I. I have another appointment in 2 weeks and I feel the outcome may require yet another surgery. I pray for all who suffer with this illness.



Posted by:  Rob001  Posted on: 10/05/2010
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.



Posted by:  Rob001  Posted on: 10/05/2010
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?



Posted by:  RNretiree(Guest)  Posted on: 09/27/2009
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].


Posted by:  RNretired  Posted on: 01/25/2010
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.




Posted by:  RNretired  Posted on: 09/27/2009
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


Posted by:  guest  Posted on: 01/24/2010
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.




Posted by:  Steph1  Posted on: 01/01/2009
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.


Posted by:  guest  Posted on: 09/11/2009
My son had the problem in his right leg. The bone was removed [about 13 cm] and regrew.



Posted by:  rcmc12837  Posted on: 09/09/2011
who was your sons dr? my daughter has fd in her right tibia. her leg is bowing more and causing more pain. thnx



Posted by:  RNretired  Posted on: 09/27/2009
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.



Posted by:  guest  Posted on: 03/10/2010
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.



Posted by:  guest  Posted on: 03/12/2010
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.




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