What the HHT?
A blog for the HHT community
Posts by Ashley Watkins
Spreading 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…
Read MoreA 1 in 5,000 Chance That Doesn’t Exactly Make You Feel Like a Winner
When you think of the lottery and hear the odds are 1 in 5000… and then your number is chosen? Instantly you feel like you are sitting on top of the world. But what happens when the 1 in 5000 in your world becomes 4 out of 5 of your children being diagnosed with HHT? Upon the mention of that news, you don’t exactly feel like a winner. And although with most diseases they say early detection is best, this breaking news didn’t seem to put us at ease as we prepared for preventative measures and a boat load of testing.
Read More“Here is the answer, he said, as he pointed to an AVM on her fingertip…”
HHT has been a part of my entire life. I watched my mother try to staunch nosebleeds for a long as I can remember. In all cases, she did it privately over the bathroom sink and without complaint. She was born a 2 pound-premature baby and as such had a variety of maladies (including a…
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