What the HHT?

A blog for the HHT community

Posts by Cathleen Kinnear

‘You got blood on your face, you big disgrace’

Currently, one of the most prized possessions our kids have is the Queen Greatest Hits CD. When Eleanor was a baby, we played Bohemian Rhapsody by Queen or the Muppets version for her every time she needed an echo or to have a test done at the hospital. The love of Queen passed to Theo and the CD is queued up in the car ready to go. Right now, We Will Rock You is…

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One Kiwis Dream for HHT Awareness

Tamara B & Shan

My first time learning about HHT was in 2016 when I was diagnosed with the disease at the young age of 43. I had suffered a fall from my horse that landed me at the Wellington Orthopedics Ward in New Zealand. During my admission, I was seen by a specialist, who had attended a seminar on a rare disease called HHT–just two days prior. He noticed I had ‘red spots’ on…

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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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