Fibrous dysplasia specialist rare bone disease assessment
Fibrous dysplasia is a rare bone condition where normal bone is replaced by fibrous tissue. This can weaken the affected bone and may lead to pain, deformity, fracture risk or changes in bone shape.
Fibrous dysplasia can affect one bone or several bones. A specialist review helps clarify the diagnosis, extent of involvement and long-term management plan.
Fibrous dysplasia affects the structure and strength of the bone.
In fibrous dysplasia, areas of normal bone are replaced by fibrous tissue. This can make the affected bone weaker, more likely to bend or change shape, and sometimes more vulnerable to fracture.
The condition may affect a single bone, known as monostotic fibrous dysplasia, or several bones, known as polyostotic fibrous dysplasia. Some patients have mild disease found incidentally, while others need specialist follow-up because of pain, fractures, deformity or involvement of important areas such as the skull, face, spine, pelvis or weight-bearing bones.
- Assessment of suspected or confirmed fibrous dysplasia
- Review of bone pain, deformity, fracture risk and imaging findings
- Advice for monostotic or polyostotic fibrous dysplasia
- Specialist input for rare bone disease monitoring and long-term care
What fibrous dysplasia can look like
Symptoms vary depending on which bone is affected, how much bone is involved and whether there are complications. Some people have no symptoms, while others experience pain, fractures or changes in bone shape.
Bone pain
Pain may occur in the affected bone, especially where weight-bearing bones are involved.
Fractures
Weakened bone may be more vulnerable to fracture, particularly in areas under mechanical stress.
Bone deformity
Affected bones may bow, enlarge or change shape over time.
Uneven limb length
If leg bones are affected, some patients may develop limb length difference or walking difficulties.
Skull or facial changes
When skull or facial bones are involved, symptoms may depend on the location and nearby structures.
Incidental finding
Some cases are found by chance on an X-ray or scan performed for another reason.
Why fibrous dysplasia happens
Fibrous dysplasia is caused by a change in bone-forming cells during development. It is usually not inherited from a parent and does not typically pass from parent to child.
It may affect one bone or multiple bones. In some patients, fibrous dysplasia can be associated with McCune-Albright syndrome, where bone changes occur alongside hormone-related features and characteristic skin patches.
How fibrous dysplasia is assessed
Assessment may include a detailed clinical history, examination, X-rays, CT or MRI scans, bone scans and blood tests depending on symptoms and the pattern of bone involvement.
A specialist review helps interpret imaging findings, assess the risk of fracture or deformity, identify whether other bones are involved and decide whether monitoring, treatment or referral to another specialist is needed.
Care depends on the bones affected and the symptoms caused
Fibrous dysplasia does not always need active treatment. Some people are monitored over time, while others need treatment for pain, fracture prevention, deformity, mobility problems or complications affecting nearby structures.
Management may involve a combination of bone health review, pain management, imaging follow-up, physiotherapy, orthopaedic opinion and specialist rare bone disease input.
Related treatments and services
Fibrous dysplasia can affect bone strength, shape, pain, fracture risk and long-term bone health. Specialist assessment can help review symptoms, scan findings, blood results and whether monitoring, treatment or wider metabolic bone review is needed.
A specialist consultation for fibrous dysplasia
Professor Keen will review your diagnosis, symptoms, pain pattern, fracture history, previous imaging, blood tests, family history, mobility and any previous specialist input.
The consultation can help clarify the extent and significance of fibrous dysplasia, whether further tests are needed and what long-term monitoring or treatment plan may be appropriate.
Fibrous dysplasia questions
Common questions from patients with suspected or confirmed fibrous dysplasia.
Is fibrous dysplasia cancer?
Fibrous dysplasia is not cancer. It is a rare bone condition where normal bone is replaced by fibrous tissue. Very rarely, complications can occur, so specialist monitoring may be recommended in selected cases.
Can fibrous dysplasia affect more than one bone?
Yes. It may affect one bone, called monostotic fibrous dysplasia, or multiple bones, called polyostotic fibrous dysplasia.
Does fibrous dysplasia always need treatment?
Not always. Some people need monitoring only. Treatment is usually considered when there is pain, fracture risk, deformity, mobility problems or involvement of important anatomical areas.
Can fibrous dysplasia cause fractures?
Yes. The affected bone may be weaker than normal and can be more vulnerable to fracture, especially in weight-bearing areas.
When should I see a specialist?
Specialist advice is helpful if you have bone pain, fractures, deformity, multiple bones involved, abnormal imaging or uncertainty about diagnosis, monitoring or treatment options.
Arrange a specialist fibrous dysplasia appointment
If you have fibrous dysplasia, unexplained bone pain, abnormal imaging, fractures, deformity or concern about rare bone disease care, please contact the practice to arrange an appointment.
Contact details
For private appointments and general enquiries, please contact the office.