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What is the prevalence of Fibrous Dysplasia?

How many people does Fibrous Dysplasia affect? Does it have the same prevalence in men and women? And in the different countries?

Prevalence of Fibrous Dysplasia

Fibrous Dysplasia is a rare bone disorder characterized by the abnormal development of fibrous tissue in place of normal bone. It affects approximately 1 in every 30,000 to 50,000 individuals worldwide. This condition can occur in any bone, but commonly affects the skull, facial bones, and long bones of the arms and legs. Fibrous Dysplasia is typically diagnosed in childhood or adolescence and may cause bone pain, deformities, and fractures. While the exact cause is unknown, it is believed to result from a genetic mutation. Early detection and management are crucial for minimizing complications and improving quality of life.



Fibrous Dysplasia is a rare bone disorder characterized by the abnormal growth of fibrous tissue in place of normal bone. It is considered a non-inherited condition, typically caused by a sporadic mutation in the GNAS gene. The prevalence of Fibrous Dysplasia varies depending on the specific population being studied.



While exact prevalence rates are challenging to determine due to the rarity of the condition, it is estimated that Fibrous Dysplasia affects approximately 1 in 30,000 to 1 in 100,000 individuals worldwide. The disorder can occur in both males and females of any age, but it is most commonly diagnosed in childhood or adolescence.



Fibrous Dysplasia can affect a single bone (monostotic) or multiple bones (polyostotic), and it may be associated with other conditions such as McCune-Albright syndrome. The bones commonly affected include the skull, facial bones, long bones, and pelvis. Symptoms can vary widely, ranging from mild bone pain and deformities to fractures and functional impairments.



Diagnosis of Fibrous Dysplasia involves a combination of clinical evaluation, imaging techniques (such as X-rays, CT scans, or MRI), and sometimes genetic testing. Treatment options aim to manage symptoms and complications, and may include medications, surgery, or other interventions tailored to the individual's needs.



While Fibrous Dysplasia is a rare condition, raising awareness among healthcare professionals and the general public is crucial for early detection, appropriate management, and support for affected individuals.


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5 answers
Fibrous Dysplasia is a rare condition

Posted Jun 9, 2017 by Lisa Hill 2050
1 in 200,000 with more females affected..from birth

Posted Jul 21, 2017 by Debra 2000
There is no prevalence of fibrous Dysplasia. Anyone can get it of natural causes

Posted Oct 7, 2017 by Kiesha brown 3050
It is rare and unpredictable because it was caused by mutations. From what I read, it affects children more as it is more a disease since birth. No gender, but yeah more on children. Mostly only one bone is affected, around 70-85 percent. Unluckily, it's not my case.

Posted Oct 23, 2020 by anna_d09 2500

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Stories of Fibrous Dysplasia

FIBROUS DYSPLASIA STORIES
Fibrous Dysplasia stories
HELLO, MY NAME IS MICHELLE, i AM 37, MY BODY HAS A LONG LIST OF UNIQUE AILMENTS. i BELIEVE MANY STEM FROM MY HAVING mCcUNE ALBRIGHT SYNDROME. i ALSO HAVE  FIBROUS DYSPLASIA IN MANY BONES IN MY SKUL AND SUSPECT IN MY ANKLE AND SOME RIBS, i HAVE SCOLI...
Fibrous Dysplasia stories
I was diagnosed when I was in the 6th grade.  It was my birthday when they did the x-ray.  They sent me to the Oncologist to confirm it was FD and not cancer.  I have FD in my Left Tibia.  As of now, I have had 11 surgeries outpatient and inpatie...
Fibrous Dysplasia stories
After suffering with chronic pain for almost 2 years I finally got a diagnosis of Fibrous Dysplasia of the skull. I have a very large lesion in the back of head that goes all the way across the occipital bone. Doctor explained that it wraps around my...
Fibrous Dysplasia stories
Hi all. I've joined this map but it's my son who has PFD. Found out when his leg broke at age 8. Long hard struggle ever since but knowing we're not alone has made it easier. Daniel is soon 12 & struggling at secondary school but has some fab friends...
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Fibrous Dysplasia forum

FIBROUS DYSPLASIA FORUM
Fibrous Dysplasia forum
I was wondering if there was a spot to clarify the type of FD we have.  There is monostotic, polyostotic and McCune-Albright syndrome with polyostotic (which i have) ?  I did not see McCune-Albright syndrome on the list. 

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