What is the life expectancy of someone with Fibrous Dysplasia?

Life expectancy of people with Fibrous Dysplasia and recent progresses and researches in Fibrous Dysplasia


Fibrous Dysplasia is a rare bone disorder that affects the normal development and growth of bones. It is characterized by the replacement of normal bone tissue with fibrous tissue, leading to weakened and deformed bones. This condition can affect a single bone (monostotic) or multiple bones (polyostotic), and it may occur as part of a larger syndrome called McCune-Albright syndrome.



The life expectancy of individuals with Fibrous Dysplasia can vary depending on various factors such as the extent of bone involvement, the presence of associated complications, and the overall management of the condition. It is important to note that Fibrous Dysplasia itself is not typically life-threatening, but certain complications associated with the condition can impact life expectancy.



One of the main concerns for individuals with Fibrous Dysplasia is the risk of fractures. Due to the weakened and deformed bones, fractures can occur more easily, especially in weight-bearing bones such as the femur or tibia. Fractures can lead to mobility issues, chronic pain, and potential complications such as deep vein thrombosis or pulmonary embolism. Proper management of fractures through immobilization, surgical intervention, and rehabilitation can help minimize these risks and improve overall quality of life.



Another important consideration is the potential for bone deformities and functional limitations. Fibrous Dysplasia can cause bones to become misshapen, leading to skeletal abnormalities and physical disabilities. For example, if the bones in the legs are affected, it can result in limb length discrepancies or gait abnormalities. These challenges can impact mobility, daily activities, and overall independence. However, with appropriate medical interventions, physical therapy, and assistive devices, individuals can often manage these limitations and maintain a good quality of life.



Additionally, the presence of McCune-Albright syndrome can influence life expectancy. This syndrome is characterized by the triad of Fibrous Dysplasia, café-au-lait spots (pigmented skin patches), and endocrine abnormalities. The endocrine abnormalities can include early puberty, hormonal imbalances, and increased risk of certain hormone-related cancers. The impact on life expectancy will depend on the severity and management of these associated conditions.



Regular monitoring and management of complications are crucial for individuals with Fibrous Dysplasia. This may involve routine imaging to assess bone involvement, hormonal evaluations, and surveillance for potential complications. Collaborative care involving orthopedic specialists, endocrinologists, and other relevant healthcare professionals is essential to optimize outcomes and ensure appropriate interventions are implemented when needed.



It is important to note that each individual's experience with Fibrous Dysplasia is unique. Some individuals may have mild forms of the condition with minimal impact on their daily lives, while others may face more significant challenges. The prognosis can also be influenced by the age of onset, the rate of disease progression, and the response to treatment.



In conclusion, the life expectancy of someone with Fibrous Dysplasia is difficult to determine precisely as it can vary greatly depending on individual factors and associated complications. However, with proper management, including fracture prevention, treatment of bone deformities, and monitoring of associated conditions, individuals with Fibrous Dysplasia can lead fulfilling lives and have a normal life expectancy.


by Diseasemaps

Normal

5/22/17 by Angie 1100

Our life expectancy is the same as anyone however I am still unsure to as how I will be later in life.

6/9/17 by Lisa Hill 2050

Normal life expectancy

7/21/17 by Debra 2000

All depends where and if there is any endocrine involvement, MAS

9/9/17 by Debby 1200

It depends on the person. Some people can live normal but others might be sad or in lots of pain by it.

10/7/17 by Kiesha brown 3050

I remembered my mother telling me I have cancer though I think it was misinterpreted. From what I read online, I have a tumor, but not cancer. I remembered one of my doctors telling me that I can only live until 9 which never happen, but pains became more prominent after that though. I plan to have a checkup and make sure to have them regularly once I reached college and can only live on my own. So you can live long unless it is too severe. I am not updated with scientific progress or researches but based on my experience, a lot of things can endanger your life if you have FD and you live with no caution. A simple misstep when I am going down from a vehicle caused a fracture in my legs that stopped me to be mobile for three months. I remembered my doctors highlighting my FD in the skull because it affected my brain already, some part of it stopped functioning if I was right. You can live as long as you want, just with caution. It can endanger your life anytime.

10/23/20 by anna_d09 2500

I believe it’s about the same, unless you get a cancerous tumor. Stress and pain doesn’t help though.

1/17/21 by Emmy 2250

Well I can only speak from my experience having Poly FD, no MAS. Many fractures and to many surgeries to count. I'm feeling it now at 50, which I never thought I would reach. But I was hard on my body when I was younger, very angry about this, sad and self-hating. I did everything you shouldn't do, just to say I could and scare my poor mom almost to death. Now when you think of living till 70 or 80, or 90... I think we all have different ideas of what living is. some wont call it life if they are restricted to barley getting around without mad pain. Some dont mind at all. FD isn't going to stop anyone from existing, unless the FD swells and squeeze's out a vein or artery. My advice to anyone listening, take care of yourself, recognize that you do have this disease but dont let that define, but do give yourself limits. Now dont be to cautious, you need to experience life and no contact your bones get softer so to speak. I rode skateboards, wrestled, weightlifting "which I am getting back into soon". But if you're younger, please take care of your feet and legs..wake up and stretch every day, it will pay off I promise. I know because I didn't and now it's very difficult. Good luck everyone, good bless. Joseph

8/16/22 by J 200

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