I am a face of HD. My name is Katie. I am almost 32 and I live in Austin, Tx with my sweet husband and our four amazing kids, all of whom, are at risk for developing Huntington's Disease. My story with HD really began when I was in high school. I have recently begun to see that time in my life for what it was. A profound, and life altering series of events. 

Watching the coverage of the bombings in Boston has made me think of my life with Huntington's in this way- I have survived 2 bombings. The first one was when I was 16, and had never heard the words "Huntington's disease," yet in 24 hours, I knew my mom had it and that I had a 50/50 chance of developing the disease as well. A second bomb went off in my life 9 years ago, when I got that dreaded message on my answering machine from my doctor, encouraging me to come into the office that very day. I knew doctors don't call you into the office for good news. A tragedy, is what it is. Everyone living with this forsaken disease, is living a tragedy...every day. People like my mom, are dying....people like me. I guess a part of me, initially  expected a bit of grandeur when I first got my positive test results. In my naivety, I kind of expected the world to stop turning. I expected people to see, when they looked at me, what I perceived as my broken body. My heart torn in two from the insane news, my dreams being crushed, my whole entire body covered in black and blue bruises, blood everywhere, broken bones sticking out of my tender skin .....because to me....this is how I felt. I had been blown apart. By something that I knew could be a threat, but refused to believe could happen to me. I needed everyone in the world to see how HD was KILLING me! I wanted people to run to me, to cover me with a blanket, and nurse my wounds. I wanted the local news to be there, plastering my tragedy all over the country. I wanted some sort of recognition....that this wasn't just something that "those people" have to endure, but in fact, something that can ruin the life of any "normal" human being. But it wasn't to be so. 

Honestly, I spent the first few days in solitude.. No one came to rescue me. No one came to wipe away my tears, and tell me they would fix it, and that everything was going to be okay. The world just kept on going. The sun rose, and it fell again. And no one knew that I was dying on the inside. Those first days were confusing. But, in seeing that the universe wasn't going to come to my rescue, I had a choice. I could continue to wallow in my own pain from my very raw wounds, waiting for someone to come along and tell me that the universe had decided to be fair and that I was being saved from my tragedy of a future. Or I could get up right then, and figure out how to forge my own way. One tiny step, in front of another tiny step . . . and I began to learn that in the face of tragedy . . . the kind that isn't always recognized, or talked about that often . . .  we must choose to be our own hero. We must choose to stand back up, after we have been knocked down. We must heal our own gaping wounds that seem unfixable. We have to do it ourselves. We have to put in the incredibly hard work of piecing things back together constantly . . . because no one is going to come to rescue us. No one can tell us that we have been healed . . . that it has all just been some misunderstanding.

My mom died at the age of 59, never feeling like she could be open about her disease, and I saw how that affected her. She was ashamed, and therefore, was unable to be her own hero. I decided several years ago that I would not follow in her footsteps. I had to make things different for me, and for my own children. Now, HD has become something we talk about together often. And I have decided to share my story on my blog as well. I want people to understand how HD affects us so deeply, so incredibly, every day. It's not easy. But we must choose to put ourselves out there, so that people know HD exists. We must talk with our children, and let them in on all of the things that are often so hard to talk about. We must be their example, we have to show them, how to be their own light in the intense darkness!  We have to do this, until our prayers of a cure are answered!




Support HDSA’s fight to improve the lives of people affected by HD and their families. Donate Now!

READ MORE