Raj Kasthuri, MD, assistant professor of hematology and oncology in the , is director of the new center for the treatment of hereditary hemorrhagic telangiectasia (HHT). HHT, also known as Osler-Weber-Rendu syndrome, is an inherited disorder of the blood vessels that can cause excessive bleeding. The most common symptom of HHT is bleeding from the nose, but HHT can also cause bleeding from the mouth, tongue, gastrointestinal tract, lungs, skin or other organs.
“Dr. Kasthuri has organized a team of specialists at UNC who are knowledgeable in the treatment and care of HHT and have been treating HHT patients for several years. We are really excited about this new collaboration,” said Marianne Clancy, executive director of HHT Foundation International.
HHT affects about 1 of every 5,000 people in the U.S. The number of people with HHT in the U.S. is estimated at 70,000. About 1,700 people in North Carolina have the disorder, which sometimes affects multiple members of the same family, Dr. Kasthuri said. It is estimated that there are about 2,800 additional people with HHT in the surrounding states of South Carolina, Tennessee, Virginia and West Virginia. None of those states have an HHT Center of Excellence.
“I am very excited to lead this multidisciplinary endeavor and look forward to providing care for a population that is underdiagnosed and underserved,” Dr. Kasthuri said.
The new HHT Center of Excellence at UNC is housed administratively within the Department of Radiology in the School of Medicine. Members of the center are:
- Drs. Charles Burke, Matt Mauro and Hortensia Alvarez — Interventional Radiology
- Dr. Mark Weissler — Otolaryngology/Head and Neck Surgery
- Dr. Jim Evans and Ofri Leitner — Genetics
- Dr. Douglas Morgan — Gastroenterology
- Dr. Jimmy Ford — Pulmonology
- Dr. Brian Jensen — Cardiology
- Dr. David Huang — Neurology
- Dr. Anand Germanwala — Neurosurgery
- Dr. George Blakey — Maxillofacial Surgery (UNC School of Dentistry)
The other 11 HHT Centers of Excellence in the U.S. are:
- Georgia Health Science University HHT Center (Augusta, Ga.)
- Johns Hopkins HHT Center (Baltimore, Md.)
- Mayo Clinic HHT Center (Rochester, Minn.)
- Oregon Health & Science University HHT Center (Portland, Ore.)
- University of California at Los Angeles HHT Center
- University of California at San Diego HHT Center
- University of Pennsylvania (Philadelphia)
- University of Texas – Southwestern (Dallas)
- University of Utah Medical Center (Salt Lake City)
- Washington University School of Medicine (St. Louis, Mo.)
- Yale University School of Medicine (New Haven, Conn.)
To request a screening at UNC’s HHT Center of Excellence, contact Karen Smith, RN, at (919) 966-2790.
Media contact: Stephanie Crayton, (919) 951-4758, firstname.lastname@example.org