Huntington’s Disease

I have known for about 5-7 years that my mom has Huntington’s Disease. If you have never heard of it, it is a progressive brain disorder that causes loss of motor skills, cognitive skills, and eventually leads to death. There is no cure. Think back to biology or genetics. It is a dominant gene so it only takes one copy for the person to develop the disease. Because my mom has it, I have a 50/50 chance of developing it myself :(. It’s really hard to watch the effects of the disease. I’m basically watching my mom die and there’s nothing that can be done about it. To see her go from being so independent and strong to not being able to perform simple things like keep her balance or drive. . .it’s heartbreaking.

It causes a lot of anxiety, because I’m looking at her knowing that this could possibly be my life. If I test positive, I have to decide if I want children and methods of conceiving those children. Being dependent on people to help me do daily tasks. Eventually eating from a feeding tube because I’ll have difficulties swallowing. It;s a lot to think about.

What gives me a little hope is that researchers are looking into developing a gene therapy. I enrolled in a study today with hopes that if I am positive, this program will either prevent onset or decrease the severity of the disease. I was able to speak with a doctor as well and he told me that I am asymptomatic!!!! :). And I should strongly consider genetic testing when I plan to start a family or show symptoms. That information really gave me some relief and motivation to stay active and healthy for as long as possible.

I tend to focus on the bad in situations, but for this I have to focus on the positives. 1) I might not have it, 2) If I do have it, a breakthrough in treatment might occur before onset, 3) Instead of taking this information and going into a severe depression, I can use it as more motivation to ENJOY life. I could die tomorrow and I would hate to leave this Earth wishing I had taken that trip, or gone to that concert, or whatever. . .


–> If you want to learn more about Huntington’s Disease check out these websites <–

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