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What the HHT?

A blog for the HHT community

Creating hope on Giving Tuesday for our littlest of patients

As a little boy, Liam seemed to feel sick very frequently – far more than his two older brothers.  He’d have a harder time recovering from illness, being sluggish, tired and missing many days from school. Mary, Liam’s mother’s concern started to grow as the pediatrician visits got more and more frequent. For years, she was told the same things – it’s probably allergies, or just a viral infection. But those answers weren’t good enough for Mary. She took him to gastroenterologists, immunologists, requested blood work and more, searching for answers. It would take nearly a decade to finally get an answer, when Liam was 14.

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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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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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