What the HHT?

Ella’s family was searching for answers to one set of questions when genetic testing revealed something they had never heard of before: HHT. Now, during HHT Awareness Month, they are sharing her story so other families can find answers sooner.

For much of Kelsey’s life, HHT was there before it had a name. It was present in her family history, in her father’s severe nosebleeds, and later in complications no one could see from the outside. Diagnosed at age 11, Kelsey would eventually face pulmonary arterial hypertension, chronic anemia, and a double lung transplant. Her story is a powerful reminder that HHT is not “just nosebleeds”—and that visibility, education, and specialized care can change everything.

For Erin Yorke, hereditary hemorrhagic telangiectasia (HHT) is not just her diagnosis. It is her son’s future, her mother’s daily reality, and the reason visibility can change everything.

Jenn shares her birthday with Global HHT Awareness Day. After her son Barrett’s brain AVM led to a life-changing HHT diagnosis for her family, June 23 became more than a birthday—it became a wish for earlier diagnosis, better treatments, and a future where no family has to face HHT alone.

For most of Donald’s life, nosebleeds seemed ordinary. His mother had them. His siblings had them. No one knew they were signs of HHT—until a routine chest X-ray revealed a lung AVM, and later, his younger sister died from a brain AVM at just 26. Donald’s story is one of grief, gratitude, screening, and the life-saving power of awareness.