What the HHT?

A blog for the HHT community

Children

Living with HHT Book

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…

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Genetics 101! Happy New Year, HHT Community!

I thought I would use this time and space to update you on the newest Friday family addition, our son, Theo! Theodore was born last month and came out a healthy, hefty bundle of snuggles and cuteness. Our life has been a giant blur of moving to a new duty station, having a baby, chasing…

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Playing the Medical Case Manager – How to Keep it all Organized

Does anyone else find it overwhelming to keep the appointments, medical offices, and treatments all straight? To remember the entire medical history, to have to explain HHT for the thousandth time, or to spend forever waiting on a hospital line to speak to someone? When you don’t have an actual medical case manager, you often…

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Little Eleanor’s First Center Visit

Wow! What a week it has been! We just got back to Kansas from our trip to the Washington University HHT Center to have our daughter screened for cerebral AVMs. A reminder for my friends and family who are reading along – an AVM is an arteriovenous malformation that can occur in the organs of patients…

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