What the HHT?

A blog for the HHT community

Awareness

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…

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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…

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June 2017 We Came Together to Raise Awareness for HHT!

Through awareness, we are unifying the HHT community, educating the public and advocating for patients and families all across the world. And through awareness, Cure HHT is able to make strides in fulfilling its mission to find, treat and cure this disease. This Little Light of Mine  Marsha Hansen’s Special Tribute for HHT Marsha Hansen came to us as so many do, wishing to raise awareness and…

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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…

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