What the HHT?
A blog for the HHT community
Blog
Why am I an HHT Warrior?
Some may ask why am I an HHT warrior? What is HHT*? Why are you so passionate about HHT? You don’t look sick, you seem healthy. These are just some of the comments and questions I hear often… often enough to drive me to write about it, especially now during HHT awareness month. The month…
Read MoreLiving 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…
Read MoreLegislative Activity Impacting HHT
Recently, I have taken a more active role in the HHT community as a member of the legislative committee. It is so important for lawmakers to pass legislation that promotes and supports research and development, especially for rare diseases like HHT. I have been pleasantly surprised at how passionate I am about advocating for legislation…
Read MoreGenetics 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…
Read MoreI am So Lucky!!!
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…
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