By providing expert specialized care for a complex hereditary disease involving malformed blood vessels, UHealth – University of Miami Health System has been certified as an HHT Center of Excellence, the only such program in South Florida and one of two designated centers in Florida.
“This certification by the international organization Cure HHT marks a significant step forward in our commitment to increase access to coordinated multidisciplinary care for our patients and families,” said Joseph Zikria, MD, the center’s founding director and assistant professor of clinical interventional radiology at the Miller School of Medicine. “Our team provides comprehensive care for the diagnosis and management of HHT to reduce health risks and improve overall quality of life.”
Although HHT (hereditary hemorrhagic telangiectasia), also known as Osler-Weber-Rendu syndrome, can affect multiple organ systems, it frequently goes undiagnosed and untreated, said Dr. Zikria, who serves as medical director of the UHealth HHT Center of Excellence. HHT is an inherited disorder that affects approximately one in 5,000 people, including males and females of all ages and from all ethnic and racial backgrounds.
“During my time as a fellow at Yale School of Medicine, I saw firsthand the true impact expert and multidisciplinary HHT care can have on patients and their families,” said Dr. Zikria, who has authored multiple scientific articles and abstracts in medical journals and presented his research at several national conferences.
Now UHealth will be part of Cure HHT’s network of more than 30 Centers of Excellence across North America. Each center completes a rigorous months-long process to obtain certification.
“For patients, the importance of being seen at a Center of Excellence cannot be overstated,” said Marianne Clancy, Cure HHT’s executive director. “Dr. Zikria has assembled a team of highly skilled and passionate clinicians who will have a tremendous impact on patients in South Florida and surrounding areas.”
Genetic Mutations Cause Abnormal Blood Vessels
HHT is caused by genetic mutations that create abnormal blood vessels, creating symptoms that vary from person to person. Some problems are evident in childhood, while others don’t appear for several decades.
Common manifestations of HHT include frequent nosebleeds, iron deficiency anemia and small red dots (telangiectasias) on the skin and in the gastrointestinal tract that can cause bleeding. More serious symptoms include shortness of breath, migraine headaches, seizures, strokes and back pain, swelling or numbness.
Many individuals with HHT develop large arteriovenous malformations (AVMs) that can grow in the brain, lungs, and liver. Through the Miller School’s AVM center, Dr. Zikria has extensive experience in treating AVMs of the lung and other parts of the body.
Genetic testing of patients and family members is an important element of treatment at the UHealth HHT Center of Excellence. Dr. Zikria noted that there are hundreds of different mutations in the three genes known to cause HHT, and each parent with a gene mutation has a 50% chance of passing HHT to a child.
“Once we do genetic testing, we can assess the severity of the disease,” he said. “A variety of treatments are available for HHT to improve quality of life and prevent life-threatening complications. Because HHT can develop slowly, we follow patients and family members with imaging on an ongoing basis.”
The UHealth HHT Center of Excellence is accepting new patients and welcomes inquiries from patients across South Florida, the Caribbean and South America.