Connect with our local chapter:
By Matthew Santamaria (msantamaria@hdsa.org)

When she was younger, 22-year-old Michigan resident Alexandra Clark looked up to her father, Christopher. He participated in all sports and Alexandra wanted to be just like him.

Alexandra wanted to be on the wrestling team and her mother did not like the idea. Christopher encouraging Alexandra’s mother to allow her to sign up. Alexandra eventually signed up for the wrestling team.

“I pushed myself to do more sports in hopes I could someday be the daughter he always hoped for,” said Alexandra. “I could see in his face that I was. Even at such a young age, things you don’t really understand then, make sense when you grow up and get to remember but most importantly reflect. I believe now that it is the only reason, I can stay sane and accept the cards that were dealt my way.”

Alexandra didn’t know how much time she had left with her father but wanted to make the most out of it. Christopher was diagnosed with the gene that causes Huntington’s disease (HD). HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

When Alexandra was young, her father started to show early symptoms of HD. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, depression, impaired judgement, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

“At such a young age you do not realize what is going on,” Alexandra explains. “You just think dad is acting weird, even after knowing about the disease, my mind didn’t process what was really happening.”

During this time, Alexandra’s parents owned State Street Barber Shop. Christopher was a barber and had a contagious smile. He was friendly with every customer. According to Alexandra, his heart was incredibly huge and was there for anyone that needed help. However, the symptoms of HD would see a different side in him.

“As I got older and he got sicker, I got more and more irritated with him,” said Alexandra. “Still not understanding the fact that it wasn’t his fault that he was doing the things that he was. Right around the time I turned 11-years-old or so is when he started to lose it mentally. He would get so much angrier than normal, and completely shut himself away from us afterwards.”

Alexandra and her brother were at risk of inheriting HD. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.

“My brother and I have never gotten along,” said Alexandra. “Throughout our whole childhood we have been toe to toe, but never seeing eye to eye. Even though him and I had the same related problems, but it just pushed us further apart. Pretty much after my dad started getting sick our whole household fell apart and distanced tremendously. I think everyone felt like they were dealing with it all on their own, even though, we were the only ones that each other could rely on to understand without being able to judge.”

Alexandra was a witness of what Christopher was going through every day. She wanted a sense of normal in her life. At the age of twelve-years-old, Alexandra started staying with friends more and was avoiding the reality that she was living in.

“I left my brother, and my mom to deal with everything on their own for months,” Alexandra explains. “I wouldn’t talk to my mom at 12-years-old for weeks. But when I finally got that call from her, I would just ball. I never meant to push myself away from her, but I was just so angry and had so much resentment because she knew this was a possibility, and at the time, I thought it was just so selfish for them to not think about what would happen if he did carry the gene.”

As Alexandra and her brother were of age, they both decided to be tested for the disease.

The decision to get genetically tested is difficult to make. Each year, 5-10% are tested. It is never the right or wrong decision to be tested. There are people that see no benefit in knowing that they will develop the disease while others want to know in order to make informed choices about their future. It can take up to several weeks to receive your results from the genetic testing center.

They both tested negative and broke the family cycle.

​Now, the family goes to HD events and will never forget the symptoms that Alexandra and her family saw. They want to show others that nobody is alone in this battle.

###

Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 41,000 symptomatic Americans and 200,000 at-risk of inheriting the disease. In less than 10% of cases, juvenile Huntington’s disease (JHD) affects children & adolescents. JHD usually has a more rapid progression rate than adult onset HD; the earlier the onset, the faster JHD progresses. HD is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously. HD is characterized by a triad of symptoms, including progressive motor dysfunction, behavioral disturbance and cognitive decline.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.

This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org