Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic disorder that affects about one in 5,000 people. HHT is also known as Osler Weber-Rendu (OWR).
HHT is caused by a gene mutation that creates malformed blood vessels that lack the structure and durability required to prevent bleeding. Bleeding can occur virtually anywhere, but the nose, lungs, and the GI tract are most susceptible, and heavy nosebleeds are common in some patients. The disease varies in symptoms and severity from person to person. While symptoms can be treated, there is no cure. Serious complications such as stroke, brain hemorrhage and even death can be prevented with the right care.
Our experienced, dedicated team offers the full spectrum of coordinated care, treating HHT as a chronic condition instead of an acute state. The program’s focus is on coordinating care for HHT patients age 14 and older with a variety of specialists who offer genetic counseling, diagnostic testing and treatment. Coordination also includes the patient’s primary care physician.
Our Hereditary Hemorrhagic Telangiectasia Program is the only one in Wisconsin designated as a Center of Excellence by the HHT Foundation International, Inc., and one of only a few designated in the Midwest. As a Center of Excellence, our physicians and staff are interconnected with other HHT Centers across the country, ensuring patients are receiving the latest diagnostics and treatments, including clinical trials.
Families and Children
Our program specializes in the treatment of adult HHT patients. We have a collaborative relationship with Children’s Hospital of Wisconsin, partnering to have HHT care needs addressed for the whole family. To learn more about HHT care at Children’s Hospital of Wisconsin, contact the Interventional Radiology Program at Children's Hospital of Wisconsin.
Since HHT is hereditary, genetic testing is typically the first step to confirming a diagnosis. It is critical that physicians have the knowledge and expertise to test for underlying symptoms and conditions that put patients at risk, including arteriovenous malformations (AVMs). AVMs are abnormal connections between the arteries and veins. A bubble-enhanced echocardiogram study may be used to find AVMs in the lungs. A brain MRI scan may be requested to determine the presence of AVMs in the brain. CT scans may be requested, as well.
HHT’s blood vessel abnormalities affect people in many different ways – from minor or heavy nosebleeds to organ damage and hemorrhaging. That’s why seeking coordinated care from a team of specialists, like those at Froedtert Hospital, is a wise choice. Treatments for HHT may include medical management, laser procedures and embolization to manage symptoms.
Enhancing Quality of Life
Many HHT patients come from great distances and have experienced limited access to care in the past. For this reason, our Hereditary Hemorrhagic Telangiectasia Program is designed to educate patients about their disease and give them and their families the tools to cope with HHT when they return home. Genetic counseling is just one of many resources offered. Support groups are also offered.
You may also benefit from the Cure HHT webinar series. Topics include nosebleed management, anemia, research, genetics, living with HHT and more.