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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Fibrous dysplasia


Other Names for this Disease
  • Fibrous dysplasia of bone
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Your Question

My one year old daughter has been diagnosed with fibrous dysplasia (FD). FD has been found on her left leg in both her tibia and fibula bones. Is there any cure for this condition?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

How might fibrous dysplasia be treated?

Unfortunately, there is no cure for fibrous dysplasia.[1]  Treatment of fibrous dysplasia depends on the symptoms that develop.  Surgery can often treat broken bones or significant bone malformations, though problems can recur and multiple procedures may be needed.[2][3]  A group of medications known as bisphosphonates has been shown to relieve bone pain in both adults and children.[4]  In adults only, these medications have also been shown to strengthen normal bone by preventing it from being replaced by weaker tissues or by increasing the thickness of the bone (density).  These medications have not been shown to prevent fractures or bone malformations.[5]  Calcium and vitamin D supplements may also be considered to help promote bone health.[6]  Radiotherapy is not recommended because it is associated with an increased risk of fibrous dysplasia becoming cancerous.[2][7][3]  Careful, long-term follow-up to monitor fibrous dysplasia is advised, particularly during pregnancy because the lesions may progress more rapidly during this period.[2][3]
Last updated: 8/25/2011

Where can I find more information on treatment for fibrous dysplasia?

The following resources contain information on treatment for fibrous dysplasia:
  • Children's Hospital Boston's web site has a fact sheet on fibrous dysplasia that includes information on treatment.
  • Medscape Reference provides detailed information on the treatment of this condition. This resource is aimed at healthcare professionals. You may need to register to view the article, but registration is free.
  • MayoClinic.com has general information on treatment for fibrous dysplasia.
  • ClinicalTrials.gov lists trials that are studying or have studied treatments for Fibrous dysplasia.
Last updated: 9/27/2012

References
  • Kaneshiro NK, Zieve D. Fibrous dysplasia. MedlinePlus. 08/02/2011; http://www.nlm.nih.gov/medlineplus/ency/article/001234.htm. Accessed 8/23/2011.
  • Merchant SN, Nadol JB Jr. Otologic manifestations of systemic disease. In: Cummings CW et al., eds. Otolaryngology: Head & Neck Surgery, 4th ed. Philadelphia, PA: Mosby, Inc; 2005;
  • Feske SK, Cochrane TI. Degenerative and compressive structural disorders. In: Goetz CG. Textbook of Clinical Neurology, 3rd ed. Philadelphia PA: Sunders; 2007;
  • Plotkin H, Rauch F, Zeitlin L, Munns C, Travers R, Glorieux FH. Effect of pamidronate treatment in children with polyostotic fibrous dysplasia of bone. Journal of Clinical Endocrinology and Metabolism. 2003; 88:4569-4575. http://www.ncbi.nlm.nih.gov/pubmed/14557424. Accessed 8/23/2011.
  • Silverman SL. Bisphosphonate use in conditions other than osteoporosis. Annals of the New York Academy of Sciences. 2011; 1218:33-37. http://www.ncbi.nlm.nih.gov/pubmed/20946575. Accessed 8/23/2011.
  • Chapurlat RD, Meunier PJ. Fibrous dysplasia of the bone. Bailliere's Best Practices & Research. Clinical Rheumatology. 2000; 14:385-398. http://www.ncbi.nlm.nih.gov/pubmed/10925751. Accessed 8/23/2011.
  • Rosenberg AE. Bones, joints, and soft tissue tumors. In: Kumar V et al., eds. Pathologic Basis of Disease, 7th ed. Philadelphia PA: Saunders; 2005;