At the age of 20, a positive test result for Huntington’s Disease can be life-altering. And it was for me. But it changed my life in a way I don’t regret. I had two choices: I could let the result of my predictive test bring me down for the rest of my life, or I could let it motivate me and live my life to the fullest. The reality is, the test didn’t change what was already there; HD was there whether I tested or not, I just knew about it now. So I let the knowledge I had been provided give me power to do better.
I have had my ups and downs in the past 7-1/2 years since being tested, but the ups far outweigh the down time. I have had the opportunity to meet amazing people through the Huntington’s community and make lifelong friendships. I fight for a cause for people I love and admire, people who show such strength while battling such a devastating disease. Every day, I’m in contact with someone, whether it’s to get a sponsor for a fundraiser, ask for a co-sponsor for a bill in Congress, talking to co-workers about what Huntington’s Disease is, trying to find out what clinical trials I can participate in, or just being there for another person who is affected by the disease.
My life is Huntington’s disease, but it’s not thinking “Oh, I’m going to die from HD”. Every day it is about finding a way to live with it, to live life my way, to make my dad’s quality of life better since he is symptomatic. It’s remembering to find the things that make me smile and laugh, the positive things, the healthier things. If I walk into a wall or bump into something, I no longer think “Oh, that is Huntington’s!”. I think, “Wow, I’m clumsy!”.
So testing for Huntington’s may have altered my life, but it did it for the better. It’s all about how I choose to live my life today.
— Lauren Holder