What the HHT?

A blog for the HHT community

Awareness

But You Look So Good!

However, looks can be deceiving… I, unfortunately, missed a blog entry last month and the opportunity to share with my HHT family. This was due to my inability to function at a normal level. The intravenous treatments I was receiving were abruptly changed in January of this year and I have been on a large…

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Wait, what is HHT

It’s challenging carrying this rare genetic condition, HHT, through life. While this disorder has been relatively recognized for years in the medical community, it is mostly unknown to the general population. Likewise, it has no standard progression over the course of a lifetime. When the flareups come, no one sees any outward signs. I imagine…

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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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