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What the HHT?

A blog for the HHT community

Every story is unique, every journey different, but we’re all in this together

We didn’t really know HHT was HHT until my mother was diagnosed in middle age by her symptoms alone.  Before that, we believed it was just nosebleeds that ran in our family, beginning with my grandmother.  We didn’t have much reason to believe otherwise. Grandma never had much trouble other than nosebleeds.  I never recall…

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A 1 in 5,000 Chance That Doesn’t Exactly Make You Feel Like a Winner

When you think of the lottery and hear the odds are 1 in 5000… and then your number is chosen? Instantly you feel like you are sitting on top of the world.  But what happens when the 1 in 5000 in your world becomes 4 out of 5 of your children being diagnosed with HHT? Upon the mention of that news, you don’t exactly feel like a winner. And although with most diseases they say early detection is best, this breaking news didn’t seem to put us at ease as we prepared for preventative measures and a boat load of testing.

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I 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…

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Early 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…

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