What the HHT?

A blog for the HHT community

Little Eleanor’s First Center Visit

Wow! What a week it has been! We just got back to Kansas from our trip to the Washington University HHT Center to have our daughter screened for cerebral AVMs. A reminder for my friends and family who are reading along – an AVM is an arteriovenous malformation that can occur in the organs of patients…

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Here We Go Again: Follow-Up for a HHT Patient

I’m starting all over again with the poking and the long needles, and the fasting before blood work is taken, and the MRAs, MRIs and CTs with and without contrast, and so on and so on and so on… Unfortunately, this is the life of a person who deals with HHT. Regardless of how I…

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Cancer, HHT and Avastin: What’s the Connection?

One of the things I love about Cure HHT is the focus on research and clinical trials for patients. I’d like to use this post to talk about the Avastin clinical trial, which I recently saw posted on Cure HHT’s media pages. Before delving into the background on this drug and its potential benefits to…

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When You Marry Into HHT

Greetings, new friends! My name is Cassi Friday and although I married into HHT, this disease has a strong hold on my life. I hope I can contribute to this wonderful blog from the perspective of a wife, mother, scientist and advocate for my loved ones with HHT. I am a medical researcher with a…

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Asking for Help Can Save Your Life

I had just gotten back from my best friends house. My eyes were red and puffy, and I tried to hide them behind my hand as I ran into my house and down the stairs. The questions to follow if my parents had seen me upset would only make me feel worse. At times like these,…

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