Patient Reveals How Nosebleeds Led to Diagnosis of Hereditary Condition

“I never had problems with nosebleeds growing up; I was an active child and young adult. In particular, I loved scuba diving,” explained Feldman. “Later in life, however, I started experiencing random excessive nose bleeds, just like my mom and grandmother.”

According to Feldman, the accumulation of the blood loss has resulted in her needing many blood transfusions over the years.

Feldman was officially diagnosed with HHT in her late 40s. Two of her siblings eventually received the diagnosis as well.

Now a grandma herself, Feldman receives care at UC San Diego Health, which recently became the only hospital system in San Diego County to be certified as an HHT Center of Excellence by the national nonprofit, Cure HHT.  

UC San Diego Health offers comprehensive treatment options for HHT to address all the different parts of the body the disease may affect. This includes over-the-counter sprays and hormone therapy for nose bleeds; laser treatment for bleeding of the hands, face and mouth; radiation for HHT that affects the brain; oral medications and more.

“As a designated HHT Center of Excellence, we have the infrastructure, clinical expertise and resources to provide comprehensive care for patients with HHT,” said Jenny Zhou, MD, hematologist and director of the HHT Center of Excellence at UC San Diego Health. “This allows for personalized, integrative, and up-to-date management for the multi-organ complications of HHT, as well as opportunities to advance research and establish access to clinical trials for novel therapeutics.”

Certification or re-certification as an HHT Center of Excellence follows a years-long rigorous process to ensure only the most highly equipped institutions earn the designation.

To become an HHT Center of Excellence, health care organizations must meet certain criteria, including possessing the staff, expertise and resources in order to optimally provide comprehensive evaluation, treatment and education to patients with HHT and their families.

More than just a nosebleed

According to Cure HHT, the genetic disorder affects approximately 1.4 million people worldwide; however, an estimated 90% of those with HHT go undiagnosed. 

The most common symptom of HHT is nosebleeds, but it can also affect blood vessels on the skin of the hands, fingertips, face, lips and lining of the mouth. Internal bleeding within the stomach and intestines is another sign of the genetic disorder that is caused by an altered gene in a person’s genetic makeup. 

“When you tell someone you get nosebleeds, it just rolls off their back like it’s a nonissue, but this isn’t your regular nosebleed,” said Feldman. “My condition has very unusual triggers and often my nose bleeds will begin at random and can last a long time. It’s a lot to manage, and every time I leave the house, I wonder if I’m going to have an episode.”

“However, I have learned how to live with this disease as I can’t let this rule my life. I have a beautiful daughter and amazing grandchildren whom I want to be there for,” added Feldman.

Currently, there are no therapies approved for HHT treatment by the U.S. Food & Drug Administration. 

For many people like Feldman, treatment options for HHT are often local interventions, such as cauterization of the blood vessels, or supportive therapies like blood transfusions and iron infusions, or off-label medication use. 

Many of these treatments often have short-term effects, create other side effects or do not address the underlying issue. However, options were limited. 

Feldman has tried everything to manage her condition, from utilizing ice packs, to avoiding certain foods and weather events, such as strong winds or dry heat, and more. 

With the help of a multi-disciplinary team at UC San Diego Health, she’s now on a treatment plan to mitigate the severity and consistency of her nose bleeds. 

In partnership with her primary care provider, Feldman is also seen by a hematologist and has been prescribed a daily pill to help manage her symptoms. Since starting this new medication, she’s not experiencing bleeding episodes as often or as severely.

Providing personalized, integrative care

There are currently 30 HHT Centers of Excellence in North America —UC San Diego Health is the only one in San Diego and one of four in California. 

HHT Centers of Excellence proactively manage the care of patients with an integrated team of experts who work closely with a patient’s HHT coordinator to ensure proper follow-up and coordination of care. 

At UC San Diego Health, this multidisciplinary team includes specialized nursing teams, dedicated social workers and geneticists, and leading physicians in hematology, cardiology, interventional radiology, pulmonology, gastroenterology, hepatology, neurosurgery, and ear, nose and throat.

“Care for people with HHT in the greater San Diego area was very fragmented and disorganized, and the HHT Center of Excellence designation at UC San Diego Health has changed this,” said Annette Von Drygalski, MD, hematologist and associate director of the HHT Center of Excellence. “Patients can now rely on a comprehensive care team that facilitates all aspects of care and is part of the person’s life-long health care journey.”

“This recertification highlights our commitment to the HHT community,” said Zhou. “With leading research, compassionate care and a dedicated team, we are ready to make a lasting impact on the lives of many patients.”

For Feldman, the care she is receiving provides hope for her future. 

“UC San Diego Health has lifted a weight off of me,” said Feldman. “I’ve been advocating for my health for a long time and now I have a team of experts looking out for me. I can live my life fully and be there for my grandkids, who very much love ‘grandma.’”