[powerpress]
Spoiler alert: if you haven’t watched the last season of Six Feet Under yet, and you plan to and want to be surprised, then don’t keep reading this. If you haven’t watched it at all yet, you probably should, but go ahead and read this now.
Unless you’ve watched the last season of Six Feet Under and watched Nate Fisher die of complications from arteriovenous malformations (AVMs), you’ve probably never heard of AVMs or the underlying cause, Hereditary Hemorrhagic Telangiectasia (HHT)—which is weird, because it affects 1 in 5000 people. It can be a pretty horrible condition to live with.
A good friend of mine from college has HHT, and she called me the other day asking me to write to a classmate of ours who is now a U.S. Representative to co-sponsor legislation that would fund early diagnosis and treatment.
Susan is living with HHT, but it hasn’t been easy. She’s had forty-two surgeries to date and more radiation than the at-risk workers at the Fukushima reactor in Sendai, Japan. She’s nearly died a bunch of times, and the symptoms and ongoing treatment regimens of HHT have made it hard for her to hold down a job or have any kind of a normal life. I’m not sure how she managed to finish a PhD in chemistry while also surviving and recovering from both brain surgery and lung surgery to correct AVMs.
A kaddish for Nate Fisher and all the real-life people you’ve never heard of who die of HHT.
