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By Matthew Santamaria (msantamaria@hdsa.org)

NOTE: The following story discusses the topic of suicide.  If you are feeling suicidal or have suicidal thoughts, visit the National Suicide Prevention Lifeline or call 1-800-273-8255.

Born in Scotland, Allyson Button now resides in Michigan. When she was in her 20’s, Allyson moved to the United States (US) and became a nurse. According to Allyson, her mother convinced her to be a nurse because of how rewarding the work is and how much she loved the profession.

It was while that she was in the US that she learned her mother tested positive for 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 during their prime working years and has no cure.

Allyson said that she did not learn about HD in nursing school, but saw an HD patient firsthand. Her mother was the first person in the family to be diagnosed with HD. Her symptoms included bad chorea, paranoid, and acted different. The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

Symptoms include personality changes, mood swings, depression, forgetfulness, impaired judgement, unsteady gait, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

Allyson went to a hospice convention to learn more about HD as a female doctor explained her the risk of HD in a family. She talked to a neurologist about having children but later had a daughter. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Five of her siblings decided to get tested.

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.

Two tested positive and three tested negative for HD. Allyson wanted to be tested once she started to develop more symptoms. As for her mother, she had a great support system. Allyson took her daughter to Scotland as she assisted as much as she could. Her mother later passed away.

In 2012, Allyson was in her 40’s as she decided to get tested because she was suffering with memory loss. The test later came back positive as her daughter is now at risk for HD, she currently resides in New York. She also has two stepchildren but are not at risk.

As the symptoms started to progress, Allyson was suffering with depression. In 2014, Allyson had an argument with her daughter which resulted in Allyson attempting to take her own life and would be sent to the hospital. According to Allyson, her daughter was disappointed, but wanted to be there for her. Allyson promised that she would not do that again.
 

However, in 2019, she broke her promise and was found overdosed by her daughter. Now, Allyson goes to support groups virtually to express how she is feeling. She has had comfort knowing that she is not alone in the HD fight.

 
Allyson has a message for the HD Community:

“Hang in there. The cure is out there. Be a part of HD trials to end HD.” 

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Huntington’s disease (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 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. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. 

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.  

HDSA was founded in 1967 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. Woody died from HD complications when he was only 55 years old, but the Guthrie family legacy lives on at HDSA to this day. 

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