Who does Huntington’s Disease Affect?

When I was old enough to really understand what Huntington’s disease did to a person and how it functioned, I was devastated. I remember praying, bartering with God. “God, if you’re listening, I need a favor.” I would pray. “If you make it so that my mom doesn’t have HD, I will do anything you ask of me. I will go to church every Sunday, I will go every day if you will it. I will do charitable works, I will help those in need; I will devote my life to your service. Just please don’t let her have HD. I can’t afford to lose her. I don’t know what I would do without her.” 

Growing up, my mom was always my rock. She was the person I turned to in every time of need. When I had problems with friends, problems with family, or problems with school, she was there to help me, comfort me and guide me through any situation. She was the most patient and empathetic person you could ever meet (and still is). She was stronger and more capable than I have ever thought any one person could be. My family called her Handy Sandy because she could fix just about anything in the home. She has always been a big proponent of DIY home improvements, and she did a good portion of the fixing in any house we lived in, along with my dad. She got job offers from plumbers and electricians, painters, and dry wall installers. She was very precise and exacting with any project she undertook. She had the endless patience to homeschool me through my middle and high school years, something that was certainly challenging for all of us and changed the dynamic of our relationship. Sometimes my father would come home from work to find my mom and I waging a war of silent treatment upon each other (usually after math lessons). I am certain he hated those days in particular, because he often had to figure out what was wrong and get us to reconcile with each other; not an easy undertaking. 

When my mother was actually diagnosed with HD, it crushed me. I was a senior in college, set to graduate in the spring, taking 6 classes and working. I had okay grades, and then she got her results back. My grades plummeted. It just didn’t matter anymore to me. I began to realize that grades aren’t everything in the world, and that there are bigger things that matter much more. I started doing poorly in almost all of my classes, and probably would have failed a bunch of them if not for the concern of several of my professors. They intervened on my behalf to ensure that I would still be able to graduate and not completely lose my GPA. They gave me Incompletes instead of Fs. 

The next semester, I worked my butt off to get good grades. I started going to counseling sessions on campus, which helped me a lot. It was really awkward when I would sometimes see my friends after a session with a runny nose and tears in my eyes. I worked hard and graduated the following spring, but it was a struggle. After I graduated I decided not to go to grad school because I needed a break from the educational system. I needed to refocus and adjust to this change in my life. 

When the statistics say that Huntington’s disease only affects 30,000 people, I believe they are wrong. That number of people might carry the gene marker, but the actual affect the gene has is much greater than just those people. It has an affect on everyone who cares about a person diagnosed with HD. This could be family, extended family, friends, coworkers, aquaintances, the list goes on and on. It affects the 150,000-200,000 people who are at risk of developing the disease. It doesn’t even take into account the spouse who has to watch the person they wanted to share their life with go through this. Children who are not at risk of the disease (by marriage or adoption) are also not accounted for. It affects whole communities that aren’t included in the statistics and discussions on the subject. It’s like saying that the experiences that all of those people go through don’t count because they don’t have Huntington’s, which is completely inaccurate and absurd. The people who should be counted first and foremost, are the entire immediate family, whether they are at risk or not, because they are the ones who will face the greatest challenges. If the affect of HD was more accurately portrayed, it would probably be closer to 500,000 people who are touched by the disease in some way.