Fibrous Dysplasia: Causes, Symptoms, and Treatment
Medically reviewed by Harsha Moole, MD, Internal Medicine. Last reviewed: October 23, 2026.
What kind of doctor treats Fibrous Dysplasia?
An orthopedic doctor, a doctor who treats bone problems, often helps with fibrous dysplasia. An endocrinologist, a doctor who treats hormone problems, may also be part of your care. Some people need a team of specialists. A direct primary care or concierge doctor can be a first stop for an evaluation and can refer you to a specialist when needed.
What is fibrous dysplasia?
Fibrous dysplasia is a rare bone disease. Normal bone is replaced with scar-like fibrous tissue. This tissue weakens the bone over time. That can lead to fractures, which are breaks, and misshapen bones. It can affect one bone or many bones. It can happen alone or as part of McCune-Albright syndrome, which also affects the skin and the endocrine system, the body's hormone-making glands. The disease does not spread from one bone to another.
Symptoms
Some people have no symptoms, or only a few. A mild case may only be found when an x-ray is done for another reason. Others have a more severe form and have symptoms in early childhood. The most common symptoms are:
- Bone pain.
- Misshapen or bowed bones.
- Fractures from weak bone.
Other symptoms depend on which bones are affected. Changes in the leg bones can lead to a limp or changes in mobility. Facial bones and sinuses can cause long-term sinus congestion. Spine changes can lead to scoliosis, a sideways curve of the spine. Skull and facial bones near the eyes and ears may rarely lead to vision and hearing loss. In McCune-Albright syndrome, a child can also reach puberty too soon or have patches of brown skin with jagged edges. In very rare cases, some people may develop a malignant form of bone cancer.
Causes and who gets it
Fibrous dysplasia starts when a gene changes while a baby is developing in the womb. The change causes bone-forming cells to fail to mature, so they make abnormal fibrous tissue in certain bones. Researchers do not know what causes the gene to change. A mother cannot prevent it. It is not inherited, so children do not get the gene from their parents and will not pass the disease to their children. The disease is not common, but anyone can develop it. It is usually diagnosed in children and young adults. Race, sex, and where you live do not influence who gets it.
How doctors diagnose it
A doctor starts with a physical exam. X-rays of the bones are taken, and an MRI, a detailed scan of the body, may be recommended. Other tests may include a bone scan, a CT scan, blood work, a bone biopsy, and genetic tests. The diagnosis is confirmed by the doctor's findings on the exam and the results of tests and imaging.
Treatment
There is no cure for fibrous dysplasia. Treatment aims to manage problems from the disease, such as repairing or stabilizing bones, relieving pain, and correcting abnormal hormone levels. Care can include medicines, surgery, and physical therapy. Physical therapy may help strengthen muscle and improve range of motion. Bone fractures and deformities are treated as needed. Hormone problems also need treatment. A doctor may prescribe bisphosphonates, a type of bone medicine, to help with bone pain. Tell your dentist if you or your child take bisphosphonates, because they can increase the risk that the jaw will not heal correctly after a dental procedure. If the head or skull is affected, find a craniofacial team, a group of doctors who treat the head and face, with experience treating this disease, and have vision and hearing checked regularly.
When to see a doctor
Contact your doctor if your child has repeated bone fractures and an unexplained bone deformity. If you already have fibrous dysplasia, follow up with your medical team on a regular basis. Have vision and hearing checked regularly if the disease affects the head and skull.
Call 911 or go to the emergency room if you have sudden changes in vision, sudden, severe pain anywhere in the body, or a head or spine injury.
How a direct primary care or concierge doctor fits in
A direct primary care doctor charges a flat monthly fee instead of billing insurance, while a concierge doctor usually charges more and often works alongside insurance. Either kind of doctor can do an exam, arrange first tests, and refer you to an orthopedic doctor or endocrinologist. They can also help keep your care organized over time.
Common questions
Is fibrous dysplasia cancer?
No, fibrous dysplasia is a bone disease where scar-like tissue replaces healthy bone. In very rare cases, some people may develop a malignant form of bone cancer.
Can fibrous dysplasia be cured?
No, there is no cure for fibrous dysplasia. Treatments may help relieve pain, and supportive measures such as physical therapy may help strengthen muscle and improve range of motion.
Is fibrous dysplasia inherited?
No, fibrous dysplasia is not inherited. It starts with a gene change that happens while a baby is developing in the womb.
Does fibrous dysplasia spread to other bones?
No, fibrous dysplasia does not spread from one bone to another. The gene change happens before birth, so only certain bones have the disease.
Can fibrous dysplasia be prevented?
No, there is no known way to prevent fibrous dysplasia. Treatment aims to prevent problems such as repeated bone fractures and to make the condition less severe.
Sources
- MedlinePlus - Fibrous dysplasia
- National Institute of Arthritis and Musculoskeletal and Skin Diseases - Fibrous Dysplasia
- National Institute of Dental and Craniofacial Research - Fibrous Dysplasia/McCune-Albright Syndrome
Medical Disclaimer
This content is for general educational and informational purposes only and is not medical advice. It is not a substitute for professional medical advice, diagnosis, or treatment, and reading it does not create a doctor-patient relationship. Always seek the advice of your physician or another qualified health provider with any questions about a medical condition, and never disregard or delay seeking professional advice because of something you read here. If you think you may have a medical emergency, call 911 (or your local emergency number) immediately.
