What the HHT?

A blog for the HHT community

Blog

How a Stroke Changed My Life

Just a few years ago, I was a 48-year-old sales manager and an owner of a large, successful manufacturing company. I was always in great shape, and when my partners and I decided to obtain disability insurance, I was rated the #1 best for my health at the time. But 3 weeks later, a “time…

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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…

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Lifelong 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…

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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…

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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…

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