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Be Brave with Huntington's Disease

Posted on May 04 2015

Be Brave with Huntington's Disease
Huntington's Disease is a genetic disease that is passed from parent to child. There are approximately 30,000 people in the United States that have this disease and another 250,000 who are at risk of inheriting the disease. If a parent has Huntington's Disease, their child has a 50/50 chance of inheriting it. Huntington's causes difficulty with cognitive skills (ex: memory, decision making, comprehension), physical skills (ex: walking, talking, self-help skills), and behavioral/emotional skills (ex: mood swings, personality changes, angry outbursts). This is a disease that needs a cure. For each bracelet that is purchased, $10 will be donated to the Huntington's Disease Society of America - WI Chapter to improve the lives of families in WI that are impacted by Huntington's Disease.

I still remember when I figured out that my mom had Huntington's Disease. I was still in high school at the time. She was showing symptoms but had not yet been tested for the disease. I knew that both her father and her brother had the disease and had already passed away. I understood that the odds of her inheriting the disease were really the flip of a coin. When I started to see changes in my mom, I knew that her coin did not land the desirable way. This horrible disease was taking my mom, a person who was honestly the most amazing and caring woman in the world, away from me and changing who she was. I remember when I was younger doing crafts with her each day that I had off of school through the years. As the years have progressed since her diagnosis and her condition has changed, I now struggle with more than just the fact that my mom is sick. As I watch her progress, I realize that this may be my story playing out in front of me, since I also have a 50/50 chance of inheriting the disease. Along with my mom, she has three siblings that have the disease. I have two sisters and many cousins that are at risk of inheriting the disease and face the same possible future that I do. Even though this is a possibility and something that I think about every day, I still make the most of my life and try to find positives. I am almost done with my Bachelor's degree in Early Childhood Education, engaged to be married, and loving my life, even with this possible outcome looming over my future. I have thrown myself head-first into spreading the word about Huntington's Disease and being a part of many different organizations that support people impacted by this disease. Lastly, if my mom wasn't sick, I don't think that we would have the relationship that we do. I love her more than anything in the world and I am so thankful for each day that I have with her. I do not know if any of these things would be in my life without this terrible disease. It may make life more difficult some days, but it has really shown me how precious each day that we have is and to make sure the ones around you know how much you love them, before it is too late to do so.

If reading my story has touched you, I want you to realize that I am only one of the hundreds of thousands of people that are impacted by this terrible disease. If you would like to help, I am selling bracelets through this site to raise money for the Huntington's Disease Society of America - WI Chapter, to help improve the lives of those impacted by Huntington's Disease. If you would like to help, it would be sincerely appreciated. I am doing whatever I can to eventually get to a day where people have to ask me, "What WAS Huntington's Disease?" not "What IS Huntington's Disease?" Hopefully these bracelets can remind people impacted by Huntington's Disease just how strong we are, as individuals, families, and a community. Hopefully they will remind people to continue to be brave, even though we are fighting this disease. Hopefully they will remind people that together, we can find a cure.

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