Skip to content

What the HHT?

A blog for the HHT community

I 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…

Read More

Hosting our First Blood Drive for HHT Awareness!

Since marrying into an HHT family, I have felt a need to do more to advocate for my family members, raise awareness, and help in any way I can. I know how precious both money and blood can be to this community, but we are not always in a financial position to give to the…

Read More

HHT Global Awareness Day

Today is June 23, 2017 and it’s HHT Global Awareness Day! As a person who has HHT disease and the author of a new book called Living with HHT, I’m excited to be part of this special day devoted to HHT awareness—and I hope my book will contribute to HHT awareness every day.  If you’re…

Read More

Blissfully Ignorant or Hyper-aware?

Does anyone else teeter between these two states of mind? My husband and I often discuss which is better – As the person with HHT, he would rather be more on the blissfully ignorant side. His symptoms are not very severe (no AVMs we know of, but a lot of nosebleeds), and his family rarely discusses their medical issues, if…

Read More
Scroll To Top