What the HHT?

A blog for the HHT community

Blog

International HHT Guidelines: Overview & My HHT Care (Recorded)

International HHT Guidelines Webinar Series Topic: Guidelines Overview & My HHT Care Join Dr. Marie Faughnan, Director, Toronto HHT Centre of Excellence as she provides an overview of the newly updated International HHT Guidelines and how they are used to set the standard of care globally for the diagnosis and treatment of HHT. Dr. Faughnan…

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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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Unexpected: Living with Crohn’s Disease, Depression…and HHT Too

Man, I don’t know where to start, so I’ll just jump right in: HHT (Hereditary Hemorrhagic Telangiectasia) is a rare illness and I’m one of the people who has it.  As a survivor, it is my duty to share my story — Life is Complicated I already had a complicated medical history—asthma, Crohn’s disease, depression—so…

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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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