What the HHT?
A blog for the HHT community
Community Stories
Dr. Conrad’s Story: A Physician’s View
For Dr. Miles Conrad, HHT care is built on more than procedures and treatment plans. It is built on trust, careful listening, and the small moments of expert guidance that can change a patient’s path. In this final Visible Together story, Dr. Conrad reflects on what patients with HHT have taught him, why expert care matters, and why this moment of innovation deserves urgent support.
Read MoreDavid’s Story: The Family HHT Leaves Behind
David does not have HHT, but HHT has shaped his family for generations. Through loss, caregiving, and his sister Carol’s experience with expert care, David’s story shows why visibility matters — not only for patients, but for every family still searching for answers.
Read MoreCarol’s Story: A Life Made Visible
For decades, Carol had to advocate for herself through severe bleeding, anemia, transfusions, and medical uncertainty. Today, expert HHT care has helped give her life back — and she is sharing her story so more patients can be seen, believed, and treated sooner.
Read MoreReflections from the Next Generation
HHT is often introduced to the world through a single symptom — nosebleeds. But HHT is never only one thing. It is a whole system disease, one that touches organs, families, and futures.
Read MoreBeyond the Visible: Tobias’ Story
Hereditary Hemorrhagic Telangiectasia (HHT) manifests differently in everyone. For Tobias, its early signs were subtle and dismissed. From a young age, he battled frequent headaches and struggled with breathlessness, even during light activity. On the playground, he was always the first to tire, leading to hurtful comments about his fitness and a significant blow to…
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