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, Iím 57, Iím from Rocky Mount, North Carolina. My father and my brother both died from Huntingtonís 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 ďHereís the thing thatís wrong with your father and by the way youíre 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 ďIs this even trueĒ because one of the things that helps you diagnose Huntingtonís is a family history and there wasnít 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, itís a 50/50 chance that I would get it. Or that my brother would get but even there itís 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 brotherís diagnosis, when he began to exhibit symptoms and got diagnosed, that retroactively confirmed, okay thatís 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 ďWell, Iím gonna get this and Iím doomedĒ and if it turned out youíre gonna get the disease, and you spent all your good healthy years worrying that youíre gonna get the disease, you know, youíve let it steal even that from you, right? And then the other thing was if you donít have it, what a waste of a life. Just a life worrying about something you donít 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 youíd spill your cup of coffee and youíd think ďOh, Iím losing coordinationĒ, you know, but no, Iím just a little clumsy. I would have the thoughts and then I would push the thoughts away. At first, there wasnít a test, and there was a breakthrough in finding a genetic marker that could identify Huntingtonís. But, you know, science moves pretty slow, and so, at some lab they identify this genetic marker that could identify Huntingtonís. 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 donít have, to go someplace far away, to get this test that might not even be right, it wasnít 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 donít have the gene, so therefore, it never skips a generation, like so itís run its course in our family, so Iíll never get it and youíll never get it, and nobody else in our family will ever get it.