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…

Marietta Times | 2016

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…

2016 is the year my largest PAVM, first detected and treated in 1993, decided to fully challenge my life. Over the previous four years, my HHT interventional radiologist had made a valiant effort to close this PAVM, but this singular cluster of mixed up pathways now threatened my existence. At 5 p.m. on a Friday…

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…