Fibrous dysplasia factsheet
Introduction
Fibrous dysplasia is a condition where normal bone is replaced by fibrous or scar-like tissue. This makes the bone weaker and increases the risk of fractures or breaks.
This condition can also be called craniofacial fibrous dysplasia when it affects the facial bones.
Fibrous Dysplasia is a congenital condition. This means your child is born with it.
There are two types of fibrous dysplasia:
- Monostotic: Affecting one bone, develops while your child grows but may stop after puberty.
- Polyostotic: Affecting multiple bones and may continue developing throughout your child’s life.
Signs and symptoms
General symptoms include:
- bone fractures
- deformities, or differences in how your child’s bones grow
- bone pain
- damage or lesions on the bones, which may stop growing after puberty
- difficulty walking.
Fibrous dysplasia affecting bones in the face or skull can cause symptoms like:
- facial asymmetry
- changing facial structure
- obstruction or blockage of the nasal airways
- misalignment of the jaw and bite, affecting chewing and swallowing
- vision or hearing problems from pressure on the optic or acoustic nerves.
Diagnosis
Your child’s doctor will diagnose Fibrous dysplasia by taking a detailed medical history and checking symptoms. Imaging studies like CT scans are also used to understand how severe the condition is and what type of surgery is needed.
Treatment
There is no cure for fibrous dysplasia. Treatments help manage symptoms and prevent problems from developing. If your child’s condition isn’t causing symptoms, their doctor may recommend regular appointments to check their development.
Non-surgical treatments
Non-surgical treatments can include:
- medications to make bones stronger
- pain management to help with fractures or bone discomfort
- physical therapy exercises to improve strength and movement
- casts, splints, or braces to treat fractures or prevent new ones
- therapy to treat hormone imbalances caused by the condition.
Surgery
Surgery is often needed to treat:
- severe fractures
- pain
- deformities or growth differences.
Your child’s surgeon may remove the damaged bone and strengthen the area with healthy bone from another part of the body.
If fibrous dysplasia affects several bones, removing all the damaged tissue might not be possible.
If bone growth continues, contouring surgery can reshape the bone. This surgery may need to be repeated as your child grows.
Management
Long term support
Long-term support is important for managing fibrous dysplasia. Your child will need rehabilitation and therapy for challenges with:
- movement
- speech
- chewing
- facial functions.
Ongoing support from specialists will help manage this as your child grows.
