What the HHT?
A blog for the HHT community
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…Read More
May 31, 2020 | The Peterbourough Examiner | By Omar Mosleh: “Most kids in the hospital spend their time thinking about going home, but Eleni Zoe Pournaras spent her time in the Hospital for Sick Children putting the finishing touches on a book she co-authored and illustrated…”Read More
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 More
This is a story that begins back in mid-summer of 2005, June 9th. Thirteen years ago, my brother, Robert, died from HHT (Hereditary Hemorrhagic Telangiectasia). HHT is a very rare and chronic blood vessel disease with little awareness and funding. Currently there is no cure for HHT. An estimated 1.4 million people worldwide suffer from…Read More
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 More