What the HHT?
A blog for the HHT community
Community Stories
Reflections 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…
Read MoreBeyond: Looking at the Diverse Faces of HHT
Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic disorder that, despite being present from birth, often goes undiagnosed for many years. A common scenario involves a family member receiving a diagnosis, which then prompts others to seek testing. Even without genetic confirmation, a clinical diagnosis can be made based on characteristic symptoms. The variability in how…
Read MoreMore Than A Nosebleed: In Loving Memory of Harper
Turning two-years old comes with many changes— from growth spurts to a surging vocabulary. But as her little Harper grew, Rebecca Newman noticed a concerning development: blue fingertips and lips. Immediately, Rebecca knew she had to seek medical care. Once referred to the New Orleans hospital PICU for testing in October of 2021, a cardiologist…
Read MoreMore Than A Nosebleed: Buddy’s Story
For years, no one could explain Buddy Pitts’ chronic nosebleeds. Raised as a self-described “military brat,” he received a range of hypotheses from Army doctors, who speculated that the bleeds could be caused by anything from bone spurs to even leukemia. Still without answers, Buddy says he eventually just learned to deal with the bleeding…
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