Fibrous dysplasia factsheet

Introduction 

Fibrous dysplasia is a congenital (exists at birth) condition characterised by abnormal bone development. The condition replaces normal bone with fibrous (scar-like) tissue. This tissue is not as hard as normal bone and makes the bone more fragile and prone to fractures and breaks. 

Fibrous dysplasia cab affect one bone or multiple bones. Any bone can be affected but it is most common in long bones like the thigh bone. 

When the condition affects the bones in the face and skull (sometimes called craniofacial fibrous dysplasia), it may cause shifting of facial features and facial asymmetry.

There are two types of fibrous dysplasia:  

  • Monostotic: affects one bone and is active while the child is growing but often becomes inactive after puberty
  • Polyostotic: which affects multiple bones and may remain active throughout a person’s life. 

 Signs and symptoms

General signs and symptoms of fibrous dysplasia can include:

  • bone fractures or deformities
  • bone pain
  • bone lesions which may stop growing when the child reaches puberty
  • difficulty walking

If your child’s fibrous dysplasia is affecting his face or skull:

  • facial asymmetry
  • changing facial structure that can affect any bone in the face
  • nasal airway obstruction
  • jaw and bite misalignment, in some cases making it difficult to chew and swallow
  • visual and hearing problems due to compression of the optic nerve or acoustic nerve

Diagnosis

The doctor will perform a complete medical history and  detailed physical examination. 

CT scans and other types of imaging are required to assess the extent of the disease and to plan surgery if needed. 

Treatment

Your child’s treatment for fibrous dysplasia will depend on how many bones are affected, where the bones are located, and results of diagnostic testing.

If the thigh bone, shin bone or upper arm is fractured due to fibrous dysplasia, surgical treatment is often necessary.

If your child’s fibrous dysplasia is affecting the bones in the face or skull, treatment will be coordinated with the craniofacial team at your treating hospital. 

Other treatment may also include medication, pain management and physical therapy. 

 Management

Rehabilitation and ongoing support is essential in long-term management of the condition. 

You may work closely with therapists or other specialists to address challenges related to physical movement, speech, chewing, and facial movement.

Resources and more information

Healthdirect provides free, trusted health information and advice, 24 hours a day, 7 days a week online or via telephone 1800 022 022. 

Last updated Wednesday 8th May 2024

Disclaimer

This factsheet is provided for general information only. It does not constitute health advice and should not be used to diagnose or treat any health condition.

Please consult with your doctor or other health professional to make sure this information is right for you and/or your child.

The Sydney Children’s Hospitals Network does not accept responsibility for inaccuracies or omissions, the interpretation of the information, or for success or appropriateness of any treatment described in the factsheet.

© Sydney Children’s Hospitals Network 2024


This factsheet was produced with support from John Hunter Children's Hospital.