What the HHT?
A blog for the HHT community
Family
HHT rocked our world
Since birth my husband Josh has known he has HHT. His mother and her five siblings all inherited it from their father (How wild are those odds!). When his mom saw a telangiectasia on his foot, she knew he had inherited it too. At this point HHT, the family believed HHT was just a nose bleeding disease. They had never had any preventative scans done.
Fast forward almost 40 years. Halloween weekend of 2021 our 12 year old daughter was diagnosed with Pulmonary Arterial Hypertension after finding out she was in severe heart failure. After a week of testing and a genetic confirmation, we found out her Pulmonary Hypertension was caused by her HHT (ACVRL1). HHT caused a malformation of the arteries that deliver blood from her heart to her lungs. Only 1% of people with ACVRL1 have PAH. Again, what crazy odds!
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…
Read MoreHow 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…
Read MoreLifelong Battle
This is my wife, Renee’s story. Renee started her battle with HHT, unknowingly, as a young child. After researching her history, with family members, it was determined that she started with nose bleeds at a very young age. She went through the normal cauterizations, and attempted treatments by local ENT’s. The treatments slowed the nose…
Read MoreHHT One-liners
Annyeonghaseyo! Hello, from South Korea! I haven’t written a blog post in a few months because our lives have been uprooted by the Army once again. My husband graduated Captain’s Career Course in May and our whole family moved from Virginia to South Korea in June! We spent time getting both our children screened for…
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