What the HHT?

A blog for the HHT community

Family

We Are Never Alone

June was HHT awareness month. The zeal to help those who may not know they have the disease was amazing. I read every letter and blog; “liked” the sentiments and banners on social media; and cheered for those running and walking for the cause. But there are other facets of what awareness brings that aren’t…

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Losing My Dog, Teddy

my dog teddy

Just after I learned I might have HHT, my family and I moved from the Boston area to Atlanta. Emory University Hospital was where I had my first PAVM embolization in 1993.  The projected two hour operation extended to just over four hours, but was pronounced successful, so we were pleased. The PAVM was coiled…

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Keep the Hope, Keep the Faith

Tania Competiello

Allow me to introduce myself as I begin to write about my personal journey with HHT and how I arrived at where I am today: My name is Tania Competiello, I am 39 years old of Portuguese descent. I was born and raised in Portugal until the age of 11, when my family immigrated to…

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The Little Green Binder

Katie's HHT Binder

I don’t know if you’re like me, but time is something I seem to need more of these days. Even if I schedule “nothing” on my calendar, something always creeps in and fills my day. As a busy wife and mom to three girls, ages 14, 12 and 9, I am always on the go! I…

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The Genetic Puzzle of HHT

I never made it to my youngest daughter’s first birthday party in 1993. Due to intense pain in my back, I had to go to the local emergency room. I had been quite healthy until then. Because I was over 40, a routine chest X-ray was ordered with other diagnostics.  They thought I might have…

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