Living with Exostoses, multiple, type 2
An inherited condition with many benign bony growths that can affect growth, joints, and nerves.
Understanding Exostoses, multiple, type 2
The growths grow outward from long bones. They can reduce bone growth, change bone shape, limit joint movement, shorten height, cause early arthritis, and press on nerves. Most people are diagnosed by age 12. GARD says the chance of these growths becoming cancerous is low and rises with age.
Signs & symptoms
Symptoms vary from person to person. GARD lists this as the most common:
- Many benign bony growths (osteochondromas)
- Changes in bone shape
- Limited joint movement
- Shorter height
- Pressure on nerves
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 does not name the gene here.
Also known as: exostoses (multiple) 2 gene; exostoses, multiple caused by mutation in ext2; exostoses, multiple, type ii; ext2; ext2 exostoses, multiple; ext2 gene
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 2.
Explore research for Exostoses, multiple, type 2
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