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…

Just after I learned I might have HHT, my family and I moved from the Boston area to Atlanta. Emory University Hospital was where I had my first PAVM embolization in 1993.  The projected two hour operation extended to just over four hours, but was pronounced successful, so we were pleased. The PAVM was coiled…