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
Sometimes lessons of courage come from the smallest of humans. Anthony was only 7 years old when we discovered he had an eight-centimeter AVM in his brain! Six months prior to this discovery, Cure HHT had published guidelines on how to treat pediatric patients with HHT. At the time, Anthony was being followed by our…Read More
Recently I had an amazing opportunity to share my HHT story with a group of researchers from Recursion Pharmaceuticals as well as local medical professionals in the Salt Lake city area. It all started by saying ‘Yes’ to a Facebook invitation. I saw on Facebook that Cure HHT was looking for a patient to volunteer…Read More
Have you read my new book, Living with HHT: Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia? It’s designed to tell you everything you need to know about HHT to keep yourself and your family as healthy as possible and to cope with the stresses of having HHT. I’m happy to report that the book, released…Read More
A silver lining is a funny thing. You wish you could see it while you are mucking your way through a crisis, but you can’t, and it often doesn’t show up for a long time, if at all. My silver lining appeared in the most unexpected of ways. This HHT story seems like it should start with…Read More