What the HHT?
A blog for the HHT community
Part 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 More
Part 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 More
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…Read More
Sharing 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…Read More
My Experience with Online Community Groups + HHT: The Good, the Bad and the Ugly (Part 3)
Introduction: With the prevalence of social media, it is almost impossible not to be connected these days. One of the most popular ways to connect with others is through community support groups, like the ones for HHT on social media sites. Most of the time, I think these groups are what our HHT community…Read More