What the HHT?
A blog for the HHT community
I was finally part of the 1%
This is a story that begins back in mid-summer of 2005, June 9th. Thirteen years ago, my brother, Robert, died from HHT (Hereditary Hemorrhagic Telangiectasia). HHT is a very rare and chronic blood vessel disease with little awareness and funding. Currently there is no cure for HHT. An estimated 1.4 million people worldwide suffer from…
Read MoreLifelong 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…
Read MoreEverything but HHT … The Story of a Diagnosis
As a former lawyer and a professional musician, I always thought I was kind of healthy. I say kind of because I’ve always had bad headaches, got tired easily and sometimes was so pale, but who cares, right? I just got used to it. I even used to practice bouldering (rock climbing) about 3-4 times…
Read MorePart III: No Nosebleeds, No Problem?
If you meet with a geneticist, they ask you about your family. My father had a brother and a sister, but my mother was one of thirteen children. Nine of them were sisters who lived to adulthood. The sisters and my mother were all very close, despite the geographical distance between my mother and the…
Read MorePart II: Floating Down the River of De-Nial
You’ll know from Part I that I was in denial. I decided not to accept Dr. Old School’s opinion that I had HHT and would try to figure out the reason for my nosebleeds on my own. I reasoned that if I knew what triggered the nosebleeds, I could change whatever behavior was causing them,…
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