Hereditary Hemorrhagic Telangiectasia (HHT)

Hereditary Hemorrhagic Telangectasia:  Nosebleeds Due to a Genetic Disorder

Patients with hereditary hemorrhagic telangiectasia may have minimal symptoms early in life.  In fact they may not know they have disease when they are young. Over time however, this genetic disorder can effect blood vessels in many areas of the body, including the nose, lungs, brain, gastrointestinal tract, skin, liver, and other organs.  It can cause substantial quality-of-life problems, and also predisposes patients to potentially significant complications. Complications from HHT can occasionally occur in patients with few or no symptoms at all.

If you have this disease, even if you are not symptomatic, it is important that you have some basic screening tests performed to see if you are “at risk” of these complications, because there are interventions and procedures that can substantially reduce the risk of complications that might otherwise occur suddenly and without warning.

This is not a common disease, certainly not a disease that is very familiar to most practicing clinicians, but there are number of Michigan Medicine providers who have special experience, interest, and desire to help patients with hereditary hemorrhagic telangiectasia maintain their health, prevent complications, and treat medical issues as they arise.

Our services include:

  • Experienced genetic counselors to evaluate patients who may have the disease and to perform genetic testing, where applicable.
  • Specialist evaluation  in otolaryngology (for nosebleeds), pulmonary diseases, interventional radiology, gastroenterology, neurosurgery, liver diseases, cardiology, heart failure, dermatology, radiation oncology,  hematology-oncology and associated pediatric subspecialties.
  • State-of-the-art interventional radiology suites, technology and experienced teams to perform embolization procedures
  • Second opinions and consultations with other physicians
  • The latest care for patients with advanced HHT disease