What the HHT?

A blog for the HHT community

Children

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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Keeping it in the Family

Hello Cure HHT community. I’m Janice Lee Jones, originally from San Jose, CA. I’m a 46-year-old woman who has been dealing with HHT unknowingly for 34 years; and knowingly for the past 12 years. My faith in Christ is what has kept me, and I excitedly look forward to a cure for HHT and the…

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For My Aunt Edie

I am a wife, I am a mother, I am a daughter, I am a sister, I am a niece, I am a person affected by HHT and am passionate about the cause!  I am focusing on HHT awareness today. No one is ever quite prepared for the loss of a loved one, especially if…

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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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