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

For twenty-five-year-old Taylor Almonte-Hahn, Huntington’s disease (HD) has been in her family for as long as she could remember.

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.

The disease can be traced to her great-grandfather as her grandmother was diagnosed with the gene that causes HD as well. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. In 2014, at the age of sixty-one-years-old, her mother passed away due to complications from HD. Her uncle is currently symptomatic.

“My family has come a long way since my mom's passing and members have even attended state and national conventions,” Taylor explains. “I am very proud of that because the denial aspect of the disease has greatly affected the family members that are positive thus far.”

The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. Symptoms include personality changes, mood swings, depression, impaired judgement, involuntary movements, slurred speech, and significant weight loss.

Three years ago, Taylor 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.

“Most of my family members have absolutely no desire to get tested, and that is there choice, I just always knew I would,” Taylor explains. “However, I wanted to wait for my mother to pass and to grieve her loss. It was definitely hard being a young kid and a teenager while having a parent with Huntington’s. Especially, since my family is not very forthcoming and talkative about the disease.”

Taylor went through an anonymous testing process as her grandmother did. She wanted to keep her testing information private until she found out the results.

“Being the youngest, an open book, and nervous about the outcome it was very hard to do,” said Taylor. “There was no sense in making everyone nervous, hearing why I shouldn’t, or having any room for doubt during the three months it took for testing.”

Then, her results came back. She tested negative for HD.

Taylor had immediate thoughts once she tested negative and was suffering from survivor’s guilt.

“You can’t help but think about your loved ones who might not be so lucky. Will they resent me? Will they not want to associate with me? How can I make their lives easier and be a support system?”

In response, Taylor decided to be an advocate for the HD community. She has attended local runs, HD galas, Bowl-A-Thons, and will be running the Chicago Marathon alongside her partner. Taylor also assists in HD fundraising at wine sampling events and a Packer Party.

“Anything to raise money towards research and helping future generations have hope is why I thoroughly enjoy fundraising and advocacy,” Taylor explains. “I also attend our local support group to hear others stories and stay involved in the community. I want to be as educated as possible especially with all the research and trials that continue to form.”

Taylor has a message for the HD community:

“HD has taught me so much about the value of life and doing what you love. “There is hope and the Huntington’s community is so strong. I am so proud and honored to be a part of it.

###

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. Each 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 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

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