What the HHT?
A blog for the HHT community
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…Read More
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…Read More
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…Read More
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…Read More
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…Read More