What the HHT?

A blog for the HHT community

Children

A Tale of Two Sisters (Part 2)

Lily&Hope

My name is Hope and I’m 8 ½ years old. My sister has had nosebleeds ever since I can remember. Sometimes she has a nosebleed in the middle of playing. Blood can drip on our Legos and we have to stop. I feel really sad when Lily’s having her nosebleeds because I really like playing…

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A Tale of Two Sisters (Part 1)

Lily&Hope

I have had nosebleeds ever since I was 5 years old. These nosebleeds aren’t your normal nosebleeds – I get them every day, sometimes more than once a day. On January 31, 2020, I was diagnosed with a very rare genetic condition called Hereditary Hemorrhagic Telangiectasia (HHT for short). I had lots of tests to…

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‘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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“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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