Living with Polyostotic fibrous dysplasia of bone
A rare bone disease in which scar-like tissue replaces parts of more than one bone, sometimes with skin spots and hormone problems.
Understanding Polyostotic fibrous dysplasia of bone
It can sometimes occur together with light brown skin spots (café-au-lait spots) and hormone problems, a combination known as McCune-Albright syndrome.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. It describes these features:
- Scar-like tissue replacing parts of several bones
- Light brown skin spots (in McCune-Albright syndrome)
- Hormone problems (in McCune-Albright syndrome)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include bone and joint specialists and genetic specialists.
- 3Consider genetic testing
Changes in GNAS are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Children's Craniofacial Association
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in the GNAS gene cause this condition.
Also known as: osteitis fibrosa disseminata; pfd; pfd - polyostotic fibrous dysplasia; pofd - polyostotic fibrous dysplasia; polyostotic fibrous dysplasia
Patient organizations
- Children's Craniofacial AssociationPolyostotic fibrous dysplasia of bone · United States
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