What the HHT?

A blog for the HHT community

Posts Tagged ‘Lung AVMs’

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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One Kiwis Dream for HHT Awareness

Tamara B & Shan

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…

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I was finally part of the 1%

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…

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