What the HHT?
A blog for the HHT community
Awareness
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 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…
Read MoreCure HHT Helps Raise Awareness for Pulmonary Hypertension
Did you know that people living with HHT are at risk of developing Pulmonary Hypertension (PH)? Cure HHT has partnered with the Pulmonary Hypertension Association (PHA) to raise awareness about the connection of these two diseases. To learn more about how HHT and PH are connected, check out our HHT and PH resources in the Cure…
Read More