Hereditary Hemorrhagic Telangiectasia (HHT) Treatment

Hereditary Hemorrhagic Telangectasia (HHT) is a genetic disorder causing abnormal blood vessel development. Although patients with HHT are first bothered by and seek medical attention for frequent nosebleeds, there are often other extremely important yet silent aspects of HHT that hold potentially more importance from a health perspective than nosebleeds.

Who Treats HHT?

There are many different specialists that are called upon to treat patients with HHT. Some specialists are involved with many patients. Others are called upon only occasionally. Many patients will eventually see two or more types of specialists, especially later in adulthood. To view Michigan Medicine providers who treat HHT, click on the physicians button in the upper right corner of the page, or click on the link to the same list of Michigan Medicine HHT providers. Below is a list of types of specialists who may treat HHT for one or more aspects of the disease. We still recommend you consider coordinating a general appointment for managing your HHT.

Patient Resources

The non-profit CureHHT.org, established 25 years ago, is an organization dedicated to providing information about HHT for patients, caregivers, doctors and researchers. CureHHT.org is typically the best starting point for the most recent and reliable information about Hereditary Hemorrhagic Telangiectasia. They are a great support group.

Make an Appointment

For Patients

We’d be happy to discuss with you the appropriate next steps, and coordinate appointments with one or more specialists at Michigan Medicine, based on your symptoms, problems, or concerns. Call our patient care coordinator at 734-763-6510 and we’ll help you organize a visit. Alternatively, you can always make individual appointments with any of our listed specialists on your own if you like.

For Referring Physicians

If you have a patient who has been diagnosed with HHT, or you suspect HHT, we can help you coordinate appointments with one or more specialists at Michigan Medicine. Call our patient care coordinator at 734-763-6510 and we can assist you. 


 

Specialists Who May Treat HHT

Otolaryngologists (physicians who treat disorders of the ear, nose and throat) commonly treat patients with HHT and nosebleeds. In particular, rhinologists (specialists in diseases of the nose, sinuses, and surrounding structures) frequently see patients with hereditary hemorrhagic telangiectasia and nosebleeds. Treatment options can span from simple recommendations, such as humidification, to more sophisticated recommendations, such as laser treatment, surgical intervention, Avastin treatments, and sclerotherapy (injections to scar the small blood vessel abnormalities).

Although nosebleeds are a substantial quality-of-life problem for patients with HHT, Michigan Medicine otolaryngology specialists recognize that there are other types of blood vessel abnormalities, in different areas of the body, that may need to be found and treated to prevent complications from the disease and keep patients healthy. Below are some other specialists who may treat HHT or other blood vessel abnormalities.

Interventional radiologists treat patients with arteriovenous malformations (AVMs) of the lungs (occasionally elsewhere) with embolization (a procedure to plug circulation into the malformation). AVMs are large blood vessel abnormalities that can range from several millimeters to several centimeters in size. They can occur anywhere in the body, particularly the nose, lungs, gastrointestinal tract, brain, and liver.

Hematologists help manage iron deficiency anemia and prescribe medications to enhance clotting. They also may prescribe stronger drugs to shrink particularly severe AVMs and help manage patients with other bleeding or blood clot risks (who may be on anticoagulants, for instance).

Pulmonary specialists help manage severe cases of HHT in the lungs, which occasionally causes shortness of breath, or interacts with other lung diseases.

Gastroenterologists: There is a subgroup of gastroenterologists in our Small Bowel Bleeding program that have particular expertise in treating vascular malformations in the gastrointestinal tract that bleed.  They use new technologies which include argon plasma coagulation (APC), capsule endoscopy, and double balloon enteroscopy. 

Neurosurgeons occasionally perform surgery on patients with vascular malformations of the brain, to reduce the chance those malformations will bleed.

Pediatricians help manage children that have more severe cases of HHT.

Obstetricians evaluate women of child-bearing age or who may be pregnant, to address pregnancy-related issues. Women with lung AVMs, in particular, are good candidates for an obstetrician-specialist evaluation. We have two providers in particular who have special interest in women with HHT who may become pregnant.

Cardiologists and heart failure specialists may see a subset of HHT patients, usually older patients, who may have developed some congestive heart failure related to HHT, vascular malformations, or liver involvement by HHT.

Dermatologists: Our cosmetic dermatologists are called upon to treat skin telangiectasias and other vascular skin lesions, often with laser treatments, for cosmetic reasons or to reduce bleeding from skin lesions.

Radiation oncologists may be asked to assess and treat patients brain vascular malformations with radiation therapy or gamma knife, for instance, instead of surgery.

Geneticists: We encourage patients to have their HHT mutation identified by genetic testing, because it may affect treatment recommendations and also makes it easier to test other family members or newborn relatives. View the profile of our genetic counselor.

Liver specialists are occasionally called upon for patients with uncommon yet significant liver involvement with large AVMS.

Transplant surgeons: Very rarely patients have severe liver AVMs. It’s extremely uncommon to have liver disease that warrants liver transplantation, but if needed, Michigan Medicine has one of the most experienced teams in the nation.  Learn more about our Liver Transplant Program.