What the HHT?
A blog for the HHT community
Everything 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,…
Read MorePart 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…
Read MoreSharing to make a difference
Recently I had an amazing opportunity to share my HHT story with a group of researchers from Recursion Pharmaceuticals as well as local medical professionals in the Salt Lake city area. It all started by saying ‘Yes’ to a Facebook invitation. I saw on Facebook that Cure HHT was looking for a patient to volunteer…
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