What the HHT?

A blog for the HHT community

Posts by Cathleen Kinnear

Courage

Sometimes lessons of courage come from the smallest of humans.  Anthony was only 7 years old when we discovered he had an eight-centimeter AVM in his brain! Six months prior to this discovery, Cure HHT had published guidelines on how to treat pediatric patients with HHT. At the time, Anthony was being followed by our…

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It’s Hard being Rare!

My name is Jerica. I’m a mother, daughter, friend, and fighter. So Many Possibilities…So Little Answers My fight started back in February 2019, when my gynecologist ordered an ultrasound for some abdominal pain. I was living in fear of having cysts on my ovaries. The test came back normal and my gynecologist referred me back…

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“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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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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