Living with McCune-Albright syndrome
A condition affecting bones, skin, and hormone glands, with bone changes, light brown skin patches, and early puberty.
Understanding McCune-Albright syndrome
Areas of scar-like tissue form in bones (polyostotic fibrous dysplasia), which may cause fractures, uneven growth, and deformity. Most people have light brown skin patches (café-au-lait spots) with irregular edges. Girls may reach puberty early. Other hormone problems can occur. It usually starts in childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Scar-like tissue in bones (fibrous dysplasia)
- Light brown skin patches (café-au-lait spots)
- Early puberty
- Uneven growth of the face or legs
- Scoliosis (curved spine)
- Overactive thyroid
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, cancer specialists, genetic specialists and hormone 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.
- 4Connect with expert centers
FD/MAS Alliance may keep lists of experts for this condition.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Cancer specialists (oncologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: FD/MAS Alliance
- 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 FD/MAS Alliance and other patient organizations
- 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. GARD describes changes that occur in only some body cells.
Also known as: albright syndrome; albright's disease; albright's syndrome; gonadotropin-independent female-limited sexual precocity; mas; mccune albright syndrome
Patient organizations
- FD/MAS AllianceMcCune-Albright syndrome · United States
- The MAGIC FoundationMcCune-Albright syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with McCune-Albright syndrome.
Explore research for McCune-Albright syndrome
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