Living with Exostoses, multiple, type III
An inherited condition with many bony growths capped with cartilage, mostly on long bones.
Understanding Exostoses, multiple, type III
The growths are most common near the ends of long bones but can also occur along the shafts, in flat bones, the spine, and ribs. The skull is usually not affected. Changes in the shape of the legs, forearms, and hands are common.
Signs & symptoms
GARD describes this feature in its summary:
- Many bone growths capped by cartilage
- Changes in the shape of the legs
- Changes in the shape of the forearms and hands
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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 rare disease patient organizations for support
- 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
This condition is autosomal dominant, which means a change in one copy of the gene can cause it. GARD says it has been linked to a spot on chromosome 19.
Also known as: ext3
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Exostoses, multiple, type III.
Explore research for Exostoses, multiple, type III
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- Eligibility is confirmed by the study team
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