What the HHT?
A blog for the HHT community
“Here is the answer, he said, as he pointed to an AVM on her fingertip…”
HHT has been a part of my entire life. I watched my mother try to staunch nosebleeds for a long as I can remember. In all cases, she did it privately over the bathroom sink and without complaint. She was born a 2 pound-premature baby and as such had a variety of maladies (including a…
Read MoreI Have My Life Back (Thanks to HHT CoEs & New Advancements)
I turned 57 this year – which is a particularly meaningful milestone for me. It’s the same age my father passed away from HHT complications in 1991. Even still, I wasn’t diagnosed until several years later. I had nosebleeds, but they didn’t seem excessive. I could tolerate them just fine – they were more of…
Read MoreEarly Scans Saved Our Son
I was shaken awake — my wife’s hand on my back. It was still pitch black in our Cincinnati hotel room. Blurry-eyed, I glanced at the nightstand. 4:30 a.m., the glowing screen read. “Everything ok?” I asked, still half asleep. “He has a high-risk brain AVM,” she said. “They posted the results in MyChart.” The words…
Read MoreA Tale of Two Sisters (Part 2)
My name is Hope and I’m 8 ½ years old. My sister has had nosebleeds ever since I can remember. Sometimes she has a nosebleed in the middle of playing. Blood can drip on our Legos and we have to stop. I feel really sad when Lily’s having her nosebleeds because I really like playing…
Read MoreA Tale of Two Sisters (Part 1)
I have had nosebleeds ever since I was 5 years old. These nosebleeds aren’t your normal nosebleeds – I get them every day, sometimes more than once a day. On January 31, 2020, I was diagnosed with a very rare genetic condition called Hereditary Hemorrhagic Telangiectasia (HHT for short). I had lots of tests to…
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