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
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
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…Read More
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…Read More
I never made it to my youngest daughter’s first birthday party in 1993. Due to intense pain in my back, I had to go to the local emergency room. I had been quite healthy until then. Because I was over 40, a routine chest X-ray was ordered with other diagnostics. They thought I might have…Read More