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Fibrous dysplasia: the signs, what causes it, getting a diagnosis, treatment, and living with it
For anyone just told it is fibrous dysplasia; for parents of a child with it; for anyone whose x-ray, taken for something else, found it by chance; and for the people who care for them. The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS, part of the NIH) says fibrous dysplasia happens when abnormal fibrous (scar-like) tissue replaces healthy bone, which weakens the bone over time and can lead to breaks and misshapen bones; that it is not passed down in families; and that there is no cure, but treatments may help relieve pain. This page passes on, by name, what NIAMS says: the signs and the bones it affects; what causes it; the tests; therapy, braces, surgery, medicines and the team; and checkups, exercise and support. It builds the words to say to a doctor or nurse, and prints a card to keep.
Right now
- A bone through the skin, a badly bent limb, a hurt head, neck or back, trouble breathing, or anyone in danger right now: call 911 (ours).
- A bone that may be broken: keep it still and get care today (ours; NIAMS says the weakened bone can break). See A bone that might be broken. Sight that is lost suddenly: an emergency room now (ours; NIAMS says it rarely affects sight and hearing).
- Thinking about suicide: call or text 988, any time (ours). See Depression.
More help
- Bones and the body: Pain, bones and joints: find the right page · A bone that might be broken · Osteogenesis imperfecta · Scoliosis · Child health · Eye care · Hearing loss.
- How you feel: Pain that has lasted for months · Depression · Caring for someone.
- Care and costs: Symptom diary · Medicines list · When you need a doctor and can’t pay · Get ready for the appointment.
- In a crisis: Help right now (988, 911). All our free tools.
Pain, a bone or a joint, and not sure this is the right page? The pages on this site for back pain, arthritis, pain that lasts, headaches, broken bones and sickle cell, on one list.
This page and its wording were written with AI (Claude) for Scarlet Beast (our AI policy). No doctor, nurse or therapist has reviewed it. The facts were read on October 16, 2026 on NIAMS’s Fibrous Dysplasia page, both parts: Overview, Symptoms, & Causes and Diagnosis, Treatment, & Steps to Take (NIH, last reviewed May 2023), and its shorter Spanish twin, Displasia fibrosa (July 2023). Ours: 911 for a bone through the skin, a badly bent limb, a hurt head, neck or back, trouble breathing, or anyone in danger; keeping a bone that may be broken still and getting care today; telling the doctor soon about a change in sight or hearing, and an emergency room for sight lost suddenly; telling the doctor soon about bone pain that is new or getting worse, or a lump that grows; 988 for thoughts of suicide; not stopping or changing a prescribed medicine on your own; notes and dates; asking what each treatment would change and what it costs; and the order of the steps. What we left out: any medicine by brand or by drug class beyond NIAMS’s own words, and any dose; anything about McCune-Albright syndrome beyond NIAMS’s one line, because the pages read say no more; how often the bone cancer NIAMS calls very rare happens (the pages do not say); and NIAMS’s research pages. This page saves nothing and loads no trackers.