Category: Community Stories

First-person accounts from people living with HHT. Posts in this category appear automatically on the Community Stories page.

October 19, 2026

Terry’s Story: Your gift turns stories into science and science toward a cure

The hardest moment hereditary hemorrhagic telangiectasia (HHT) has given me happened in a recovery room, while my youngest daughter was still coming out of…
June 29, 2026

Kelsey’s Story: When the Danger Is Not the Nosebleeds

Kelsey’s nosebleeds were mild. HHT still took her to a double lung transplant, through complications nobody could see.
June 22, 2026

Donald’s Story: What We Know Can Save a Life

Nosebleeds ran through Donald’s family and nobody thought much of it. A routine chest x-ray at university changed that, but not before his sister…
June 10, 2026

David’s Story: The Family HHT Leaves Behind

David does not have HHT. It has still shaped his father, his sisters, and the nephew his family lost at 24.
June 8, 2026

Carol’s Story: A Life Made Visible

For most of her life with HHT, Carol had to be the best-informed person in the room about her own condition. She thinks no…