What the HHT?
A blog for the HHT community
Blog
Early Scans Saved Our Son
I was shaken awake — my wife’s hand on my back. It was still pitch black in our Cincinnati hotel room. Blurry-eyed, I glanced at the nightstand. 4:30 a.m., the glowing screen read. “Everything ok?” I asked, still half asleep. “He has a high-risk brain AVM,” she said. “They posted the results in MyChart.” The words…
Read MoreA Tale of Two Sisters (Part 2)
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…
Read MoreA Tale of Two Sisters (Part 1)
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…
Read MoreUnexpected: 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…
Read More‘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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