What the HHT?

A blog for the HHT community

Genetics

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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Lifelong Battle

This is my wife, Renee’s story. Renee started her battle with HHT, unknowingly, as a young child.  After researching her history, with family members, it was determined that she started with nose bleeds at a very young age.  She went through the normal cauterizations, and attempted treatments by local ENT’s.  The treatments slowed the nose…

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Part I: Dr. Old School, Diagnosis and Denial

Maybe this will sound familiar to you. Pesky nosebleeds that, over time, become prevalent, preoccupying and pernicious. I have suffered from nosebleeds since I was a child. Other than that, I had been in excellent health, so my doctor never thought much of them. By my late thirties, the nosebleeds had gotten so bad that…

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