Living with Hereditary hemorrhagic telangiectasia type 4
An inherited blood vessel condition causing frequent nosebleeds and abnormal vessel connections, including in the lungs.
Understanding Hereditary hemorrhagic telangiectasia type 4
These connections can occur in the skin, the moist linings of the body, and organs. They can lead to frequent nosebleeds and malformations in the lungs. It can look different from person to person.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Based on the summary, it can include:
- Frequent nosebleeds
- Abnormal artery and vein connections
- Malformations in the lungs
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 it can be caused by changes in different genes. It is autosomal dominant, so one changed copy of the gene is enough.
Also known as: hht4
Patient organizations
- The Aneurysm and AVM FoundationHereditary hemorrhagic telangiectasia type 4 · United States
You are more than your diagnosis
Perspectives from people navigating life with Hereditary hemorrhagic telangiectasia type 4.
Explore research for Hereditary hemorrhagic telangiectasia type 4
Explore actively recruiting Hereditary hemorrhagic telangiectasia type 4 studies with HealthSpark.
Find actively recruiting studies for Hereditary hemorrhagic telangiectasia type 4 with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Hereditary hemorrhagic telangiectasia type 4 studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Hereditary hemorrhagic telangiectasia type 4
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Hereditary hemorrhagic telangiectasia type 4 experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.