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Hereditary hemorrhagic telangiectasia

Medically reviewed by Last updated on Dec 28, 2022.


Hereditary hemorrhagic telangiectasia (tuh-lan-jee-uk-TAY-zhuh) is an inherited disorder that causes abnormal connections, called arteriovenous malformations (AVMs), to develop between arteries and veins. The most common locations affected are the nose, lungs, brain and liver.

These AVMs may enlarge over time and can bleed or rupture, sometimes causing catastrophic complications.

Spontaneous and unprovoked nosebleeds, sometimes on a daily basis, are the most common feature. Persistent bleeding from the nose and the intestinal tract can result in severe iron deficiency anemia and poor quality of life.

Also known as Osler-Weber-Rendu disease, hereditary hemorrhagic telangiectasia (HHT) is a genetic disorder that you inherit from your parents. Its severity can vary greatly from person to person, even within the same family.

If you have HHT, you may want to have your children checked for the disease because they can be affected even if they're not experiencing any symptoms.


Signs and symptoms of HHT include:


HHT is a genetic disorder you inherit from your parents. It is an autosomal dominant disorder, which means that if one of your parents has HHT, you have a 50 percent chance of inheriting it. If you have HHT, each of your children has a 50 percent chance of inheriting it from you.


Your doctor may diagnose HHT based on a physical examination, results of imaging tests and a family history. But some symptoms may not yet be apparent in children or young adults. Your doctor also may suggest you undergo genetic testing for HHT, which may confirm a suspected diagnosis.

Imaging tests

In HHT, abnormal connections called arteriovenous malformations (AVMs) develop between arteries and veins. The organs most commonly affected by HHT are the lungs, brain and liver. To locate AVMs, your doctor may recommend one or more of the following imaging tests:


If you or your child has HHT, seek treatment at a medical center with experience treating it. Because the disorder is uncommon, finding a specialist in HHT can be difficult. In the United States, HHT Centers of Excellence are designated by Cure HHT for their ability to diagnose and treat all aspects of the disorder.


Drugs that help reduce the bleeding associated with HHT can be divided into three broad categories:

If you develop iron deficiency anemia, your doctor may also suggest intravenous iron replacement treatments, which usually are more effective than taking iron pills.

Surgical and other procedures for the nose

Severe nosebleeds are one of the most common signs of HHT. These sometimes occur on a daily basis and can cause so much blood loss that you become anemic and need frequent blood transfusions or iron infusions.

Procedures to reduce the frequency and severity of nosebleeds may include:

Surgical and other procedures for the lungs, brain and liver

The most common organs affected by HHT are the lungs, brain and liver. Procedures to treat AVMs in these organs may include:

Lifestyle and home remedies

To help prevent HHT nosebleeds, you may want to:

Preparing for an appointment

Here's some information to help you get ready for your appointment.

What you can do

When you make the appointment, ask if there's anything you need to do in advance, such as fasting before having a specific test. Make a list of:

Take a family member or friend along, if possible, to help you remember the information you're given.

Examples of questions you may want to ask your doctor include:

Don't hesitate to ask other questions.

What to expect from your doctor

Your doctor is likely to ask you several questions, such as:

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