By Jonathan Brat and Grace Blanton
A few months ago, my Dad was diagnosed with Huntington’s Disease. Over the summer, he realized that his body would involuntarily move, and would sometimes have strange tics happen with his muscles at random. Not only did it cause spasms in his limbs, but it would also cause him to have slurred speech and difficulty eating and swallowing. He decided to go to the Southern New Jersey Regional PKU Center and underwent some neurological and psychological tests. A genetic test was also conducted to find if he had inherited any disease.
The results came back, and he was astonished to find out that he actually had Huntington’s Disease. This is a trinucleotide repeat disorder in the fourth chromosome that affects the brain and how it functions. Even though it came as a surprise, it did explain his unusual jaw clenching, teeth grinding, and muscular contractions. He would sometimes lose coordination and balance, and end up stumbling or occasionally even falling. Apparently he got it from his mother. This made sense since the gene can be passed on autosomally. It also made sense that he hadn’t realized these abnormalities before, because the disease usually starts to affect a person in their thirties or forties.
This diagnosis was very hard for the entire family, since Huntington’s is such a serious and life threatening disease. In fact, most people die fifteen to twenty years after they are diagnosed. With that in mind, we must deal with this tragedy in the best way possible.
Every day, my dad takes a variety of medicines to help lessen the disease, but none can fully cure him. Along with medication, he goes through many types of therapy. He attends psychotherapy, speech therapy, physical therapy, and occupational therapy. His case is very severe, and he goes to at least two different therapies a week.
It was hard for me to see him suffer, and realized I needed more information on this disease to help me be there as much as possible for him. Although many websites offered great facts about Huntington’s Disease, I found a website that helped me learn how to cope with my dad’s condition while learning more about what he is going through at the same time. This website is can be found at www.hdsa.org.
Since my dad has this disease, that means that I have a fifty percent chance of inheriting the disease as well. Now that I know about the symptoms and effects that this disease can have on me, I will be better prepared to face any problems that may arouse in a few years when I become middle-aged. When I researched this disease, I found out that I can use In Vitro Fertilization when getting a genetic test to make sure that my children do not also have this life-threatening disease.