What the HHT?
A blog for the HHT community
Posts by Riley Blevins
June Awareness Month
HHT Awareness Month is here, and we are expanding our reach on a world-wide level as we launch our #LetTheWorldHearUs campaign.
The world is all around…waiting to hear your voice. Sharing your HHT experiences—the good and the bad—can make all the difference. By joining us this Awareness month, together we can reach the ears of the health care industry, legislative decision-makers, and the global population to bring awareness forth about a disease that impacts 1 in 5000 people worldwide. With 90% of HHT patients still undiagnosed, HHT has gone unheard for far too long. We need to change that once and for all!
Read MoreSpreading Awareness 1 Mile at a Time
“What is HHT?” It’s a question Marijo McCune gets asked often, and it’s exactly what she hoped to accomplish when she made the decision to create the license plate that reads, ‘CURE HHT.’ “Though I may never know how many people have asked Google [What is HHT], I’m sure there’s been many. They say curiosity…
Read MoreSpreading Awareness 1 Mile at a Time
I’ve always been drawn to vanity plates. They really can stimulate your mind and keep you guessing. Some are more self-explanatory than others, and others can lead you on a search asking “what is that”??? Which is exactly what I hoped to accomplish with my “CURE HHT” Ohio license plate. I want people to ask…
Read MoreHHT Global Awareness Day
HHT Global Awareness Day (June 23rd) Get loud and #LetTheWorldHearUs In recognition of awareness day, we’re giving a 10% discount on all items purchased from our store on June 23rd! Why 10%, you ask? It’s estimated that only 10% of HHT patients around the world are diagnosed today. While HHT can be a brutal and…
Read MoreEvery story is unique, every journey different, but we’re all in this together
We didn’t really know HHT was HHT until my mother was diagnosed in middle age by her symptoms alone. Before that, we believed it was just nosebleeds that ran in our family, beginning with my grandmother. We didn’t have much reason to believe otherwise. Grandma never had much trouble other than nosebleeds. I never recall…
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