What the HHT?
A blog for the HHT community
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.Read More
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 More
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 More
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…Read More
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…Read More