Jeff Knight

As Interviewed by Harrison Knight, March 20, 2019

Jeff Knight: In His Own Words.

I'm interviewing Jeff Knight about the rare disease Huntington's Disease and how it affected his family.

My name is Jeff Knight, I’m 57, I’m from Rocky Mount, North Carolina. My father and my brother both died from Huntington’s Disease. I was 17, and it was a letter from my Grandmother, my father's mother, my parents had split and in the mystery that was what was wrong with my father, my Grandmother had been pretty persistent taking him to different doctors. Finally one doctor suspected Huntington's and he got a diagnosis about that time and my grandmother wrote to me and my brother to say “Here’s the thing that’s wrong with your father and by the way you’re both at risk for having it too. It was a shared risk that we both had. You know, each of us knew that we might get it, and each of us knew that the other might get it. It was definitely a thing that we bonded over. So I mean I thought about it a lot, obviously. And at first I thought about it in terms of “Is this even true” because one of the things that helps you diagnose Huntington’s is a family history and there wasn’t one. So it was a thing to worry about, but I tried not to worry about it mostly on the grounds that this might not even be the case. Like he might not even have it, and if he has it, it’s a 50/50 chance that I would get it. Or that my brother would get but even there it’s 50/50. So I did a lot of work on resilience trying to not let this possibility control my life. And then later when his diagnosis was confirmed, really it was confirmed by my brother’s diagnosis, when he began to exhibit symptoms and got diagnosed, that retroactively confirmed, okay that’s definitely what my father had. But he and I, before he was really having symptoms, we would talk about it. And our view was that the worst thing you could do was just assume “Well, I’m gonna get this and I’m doomed” and if it turned out you’re gonna get the disease, and you spent all your good healthy years worrying that you’re gonna get the disease, you know, you’ve let it steal even that from you, right? And then the other thing was if you don’t have it, what a waste of a life. Just a life worrying about something you don’t even have. So I did a lot of work trying to be mentally tough about it, and not letting this worry consume me. So maybe you’d spill your cup of coffee and you’d think “Oh, I’m losing coordination”, you know, but no, I’m just a little clumsy. I would have the thoughts and then I would push the thoughts away. At first, there wasn’t a test, and there was a breakthrough in finding a genetic marker that could identify Huntington’s. But, you know, science moves pretty slow, and so, at some lab they identify this genetic marker that could identify Huntington’s. But to convert that to a test, that regular people could actually take, is a process, you know. So, at first there were just a few places in the country that could do it, and the number of potentially inconclusive results was higher than I was willing to accept. I mean maybe it was an 85% accurate test, so you could get a false positive or a false negative. And then the other thing was it was hugely expensive. You know, spending all this money I don’t have, to go someplace far away, to get this test that might not even be right, it wasn’t very appealing. But the test got refined, I looked into getting a test and science had caught up to some of my objections so you could get the test as close as San Antonio, and instead of being a few thousand dollars, it was a few hundred dollars, and instead of having an 80, or 85% accuracy rate it had pretty close to a 100% accuracy rate. So for all those reasons, I decided to go ahead and get the test, and then when I got the test, and got the good result, that you know, I don’t have the gene, so therefore, it never skips a generation, like so it’s run its course in our family, so I’ll never get it and you’ll never get it, and nobody else in our family will ever get it.