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What the HHT?

A blog for the HHT community

“How the Healthcare Industry Failed my Daughter”

Hello everyone. My daughter, Sofia, is 13 years old and has recently been diagnosed with HHT. When Sofia was about three years old she started getting frequent nosebleeds. We tried all the obvious things, humidifiers, Vaseline or Neosporin in her nose, etc. As she got older, the nosebleeds became more frequent, more intense and harder…

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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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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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HHT One-liners

Annyeonghaseyo! Hello, from South Korea! I haven’t written a blog post in a few months because our lives have been uprooted by the Army once again. My husband graduated Captain’s Career Course in May and our whole family moved from Virginia to South Korea in June! We spent time getting both our children screened for…

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Living with HHT Book

Have you read my new book, Living with HHT: Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia? It’s designed to tell you everything you need to know about HHT to keep yourself and your family as healthy as possible and to cope with the stresses of having HHT. I’m happy to report that the book, released…

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