Raising Awareness for Hereditary Hemorrhagic Telangiectasia (HHT) at UCSF

Torianna Lomax Truong, MS, patient care coordinator for the UCSF HHT Center of Excellence.As Hereditary Hemorrhagic Telangiectasia (HHT) Awareness Month unfolds, the UC San Francisco (UCSF) Department of Radiology and Biomedical Imaging is pleased to highlight Torianna Lomax Truong, MS, a patient care coordinator for the UCSF HHT Center of Excellence. In an extension of her typical daily tasks, Truong joined a recent and very successful advocacy trip to Washington, DC with Cure HHT, a project of HHT Foundation International. This “HHT on Capitol Hill Day” aimed to raise awareness about HHT, highlight efforts of UCSF and other HHT Centers of Excellence to improve patient outcomes, and request additional funding.  

HHT is a genetic disorder characterized by abnormal blood vessel growth. These lesions typically appear in the brain, lungs, liver, and gastrointestinal tract, and can cause sudden stroke, heart failure, and pulmonary hypertension if untreated. The lesions are most common in the nose, leading to frequent nosebleeds, which often serve as the initial symptom.

Truong explains, "HHT is more than a nosebleed," a phrase used to raise awareness among health care providers who might only associate the disorder with its most visible symptom. The complexities of HHT require a comprehensive and versatile approach to care. "Providers often see patients for recurrent nosebleeds, but then they must investigate further to uncover the underlying condition and its broader implications throughout the body," Truong notes. This diagnostic journey emphasizes the importance of specialized knowledge and resources in managing HHT.

As the HHT clinic administrator, Truong's responsibilities are multifaceted. "I provide initial information to patients about HHT, manage the clinic, deal with billing insurance. Pretty much anything that doesn't involve the actual physicians’ care,” shares Truong.

The HHT clinic also conducts regular follow-up with patients, conducting imaging studies every one to five years to monitor the progression of lesions. Truong coordinates these visits and leads a multidisciplinary conference once a month, ensuring comprehensive care. "I advocate for patients, addressing their concerns and communicating their needs to doctors," she adds. This holistic approach aims to provide continuous and tailored care to each patient and contributes to HHT Centers of Excellence demonstrating positive patient outcomes such as fewer hospitalizations, less loss of life, and higher quality of life.

Truong finds working with HHT patients to be particularly rewarding due to the complexity and variability of the disorder and the unique challenges and research opportunities associated with HHT. "I wear a lot of hats, and that's what makes it interesting," she shares. "This particular disorder involves a lot of research because it is a rare condition. Even though it's the common thread among the patients in our clinic, there's still a lot that's unknown," she notes.

UCSF’s HHT Center of Excellence stands out, with a multidisciplinary team of diagnostic interventional and neurointerventional radiologists, cardiologists, hepatologists, dermatologists, hematologists, neurologists, otolaryngologists, pulmonologists, and neurosurgeons dedicated to addressing the diverse challenges posed by HHT. Truong emphasizes the importance of this approach, stating, "Our team, especially with the monthly conference we run, tries to answer the unsolved questions about the disorder." This collaborative effort is crucial in advancing the understanding and management of HHT, as it allows for the integration of various medical perspectives and expertise.

Torianna Truong at the office of Representative Kevin MullinTruong’s involvement extends beyond clinical duties to advocacy and research. She recently participated in a Cure HHT delegation to Washington, DC, to lobby for increased federal funding for HHT research and treatment. "We asked for an additional million dollars for fiscal year 2025, emphasizing the need for ongoing support for rare diseases," she explains. "The funding supports 15 of 28 HHT centers across North America, enabling them to hire full-time coordinators, facilitate continuing medical education, and conduct clinical research. My unique perspective of being a patient coordinator allowed me to give an insider’s view on what the funding actually supports within UCSF’s Center of Excellence and the difference that it can make, when we compare that to centers that are not currently funded by the Health Resources and Services Administration (HRSA) grant program.”

Reflecting on highlights of the advocacy trip, Truong said, “After meeting with California senators Alex Padilla and Laphonza Butler and representative Kevin Mullin, I was also asked to provide support for HHT patients who met with Illinois senators Richard Durbin and Tammy Duckworth. To end our day of advocacy we held a briefing inside the Capitol Visitor’s Center. We invited the senators, representatives, and their staff members from across the US whom we had met to summarize the purpose and benefits of increased HHT funding. The next day, Tuesday, April 9, we learned that President Biden signed the bill and it included the full $2 million request for FY 24 and FY25! So this was a big success, not only for UCSF, but for Cure HHT and the HHT Centers of Excellence throughout North America.”

We are grateful to Cure HHT and Truong’s contributions to their advocacy. HHT Awareness Month is an opportunity to recognize the physicians and health professionals who make up UCSF’s HHT Center of Excellence. Even more, we are proud to serve our patients with HHT, whether through compassionate multidisciplinary clinical care, basic and translational research, or advocacy.