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By Matthew Santamaria (msantamaria@hdsa.org)

One incident can change someone’s life forever. This is what happened to Allyssa Dehaan. When she was 10 years old, Allyssa started noticing her aunt was acting erratic and had wobbly movements. Her first initial thought was that she was just drunk and nothing else. However, this was not the case.

“Growing up, I knew there was something different about my family,” said Allyssa. “We had this big secret no one wanted to talk about and we pretended it didn’t exist.”

The erratic behavior and wobbly movements are symptoms of Huntington’s disease (HD) for which her aunt had. This is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure.

Her aunt would eventually take her own life which led to Alyssa trying to find out more about the disease that runs in her family: “After finding out, I threw all my extra time into researching what this was, and knew my mom was also at risk. Any school project, I talked about. For some reason, some gut instinct told me I would eventually have this disease.”

At 16 years old, she started noticing a difference with her mother. For example, her mother started to drop objects and have angry outbursts. This is when Alyssa was worried and begged for her mother to be tested. According to her mother, she tested negative but this would not be the case.

A few years later, Alyssa was pregnant and was due any day. Her mother would then sit Alyssa, her brother and sister down to explain to them that she was in fact positive with HD. “I was every emotional in that moment, but I remember just choosing to be mad at her,” said Alyssa. “I immediately wanted to be tested but was not allowed because I was pregnant. My mom wasn’t extremely mad at that point so it was kind of put to a back burner.”

Once Alyssa had two children, she wanted to know if she carries the disease. She would then go to the Marshfield Clinic in Wisconsin to be genetically tested. The test would come back with a repeat of 44. This means that she is positive for the HD gene. Her other two siblings do not know their gene status and her children are at risk.

“I remember when I decided to be tested it felt like everyone in my family took 5 giant steps away from me, and I have felt extremely alone,” Alyssa explains. “HD is an extremely difficult topic to discuss, and I think everyone in my life has to process it in their own way. The hardest part about the disease for me is the isolation you feel after your results. The first 3 years after being tested I completely failed at why I wanted to be tested, I was extremely depressed, often times laying on my bathroom floor crying myself to sleep. The immense amount of guilt you feel as a parent knowing you may give this part of you to your kids is earth shattering.”

Alyssa lives in Ontonagon, Michigan in the Upper Peninsula. According to Alyssa, she is isolated from professionals that can provide more information about the disease. She would then contact the Hennepin County Medical Center in Minneapolis, Minnesota. This is one of the 47 HDSA’s Center of Excellence programs in the country.

In 2018, she drove to Minneapolis and met with her neurologist at the center. She made a trip out of it and was able to tour the stadium alongside her family. While there, her neurologist convinced her to be a part of Enroll-HD, a world observational study for HD families. This would help convince her to become more involved in the HD community.

“After having 2 kids, I wanted to be an advocate for this disease,” said Alyssa. “I wanted to give back and be part of any research I possibly could and be a support system for other people who were affected by HD.”

She would then create a separate Instagram account for HD related topics and connect with people from around the world. This turned out to be therapeutic for her because Alyssa would connect with people from around the world and she didn’t feel alone.

“You have this powerful connection to them on a deeper level than anyone in your life,” Alyssa explains. “I tend to lean on these people even more than family because whenever you bring up HD, it still feels taboo, or people change the subject.”

Recently, she got involved with HDSA’s National Youth Alliance (NYA). She noticed that events are normally 4-6 hours away and wanted to start an event closer. She lives in a town of over 2500 people who have several families affected by HD in some capacity. In January of this year, she helped put together the Spaghetti Dinner Fundraiser. The event led to about 250 people served and raised over $3,000. However, she wants to do more.

The amount of support we received was incredibly humbling and over whelming,” said Alyssa. “We are planning a benefit concert in May. I am also planning on attending the National Convention and the NYA retreat in California this year. I applied to be regional lead for the NYA, since there aren’t any resources close to us. I want to be an outlet for the families around us for resources.”

She continues:

“The one thing I hope people learn from me is to never give up hope, always keep fighting. We never know when there will be a cure. Our HD community is one of the best and if I have Huntington’s disease at least I have this amazing HD family to go through it with. I have found so much support through the NYA and the support I’ve gotten from them is irreplaceable. HD typically makes us all feel alone, but we are here, our lives matter and they will go on. Our lives will mean something if we chose to make it that way and that’s what people will remember about us.”

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The Huntington’s Disease Society of America (HDSA) 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