Living with Hereditary hemorrhagic telangiectasia type 3
An inherited blood vessel condition with abnormal vessels in the skin, linings, and organs, and bleeding.
Understanding Hereditary hemorrhagic telangiectasia type 3
Abnormal vessels can form in the skin, mucous membranes, and organs. Nosebleeds and bleeding in the digestive tract are common. Organs that can be involved include the lungs, liver, and brain. GARD says HHT3 is linked to chromosome 5q31.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Based on the summary, it can include:
- Nosebleeds
- Bleeding in the digestive tract
- Small red marks on skin and linings (telangiectases)
- Abnormal blood vessel connections in the lungs, liver, or brain
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 The Aneurysm and AVM Foundation
- 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
GARD says HHT3 is linked to a change on chromosome 5q31. It is autosomal dominant, so one changed copy of the gene is enough.
Patient organizations
- The Aneurysm and AVM FoundationHereditary hemorrhagic telangiectasia type 3 · United States
You are more than your diagnosis
Perspectives from people navigating life with Hereditary hemorrhagic telangiectasia type 3.
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