What the HHT?

A blog for the HHT community

5 Tips for Taking it Day by Day

As an individual faced with HHT, I’ve discovered it involves a great deal of balancing, rearranging, adjusting and attempting to maintain the daily challenges of a healthy lifestyle that’s beneficial for me. This is definitely true for anyone faced with any type of sickness and disease, and the many discomforts and interruptions that brings. But…

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A Center for My Universe

I am living north of Atlanta.  It is 170 miles to my local HHT Treatment Center in Augusta, GA. When I learned that I probably had HHT in the early 1990s, there was just one HHT Treatment Center – Yale University in New Haven, CT. At that point, I was living north of Boston. It…

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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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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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