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By Matthew Santamaria (msantamaria@hdsa.org)

Iowa resident Jim Hagen loved his wife, Leslie, through thick and thin. He did not let Huntington’s disease (HD) define who she is and change his love for her.
 

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.

Leslie’s father was adopted and did not have medical records from his birth parents. Leslie is one of three sisters and has four brothers. Her father dealt with cognitive (mental) symptoms that showed later in his life. He died more than twenty-five years ago.

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.

However, the HD battle would not end as they were all at risk. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. All four brothers tested negative. One sister passed away and another tested positive. As for Leslie, she worked at the University of Iowa and decided to get tested for HD.

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.

University of Iowa is one of the 54 HDSA Centers of Excellence that provide an elite team approach to HD care and research. Professionals have extensive experience working with families affected by HD and work together to provide families the best HD care program. 


Leslie tested positive for HD. This did not faze Jim as he wanted to do everything that was needed to help his wife. They have two children that were now at risk.

Jim would start to do more research and learn more about HD. He was incorrectly told that it may skip a generation and the male side is easier to pass HD on as it gave them false hope.

Leslie took HD head on as she continued to workout with her mother and was always active. However, Leslie started to have more involuntary movements. Once she started to have more symptoms, Jim became her caregiver as he worked only ten years after she was diagnosed.

Jim would get assistance from his family and hospice. He remodeled the bathroom to help her get in and out. He had a great support team to help adjust the house as she was now in a wheelchair. According to Jim, everybody needs to have that support system.

After she fell three times in her house, Jim helped get her ramps as they were built for free. People in his town helped with the renovations. He also cooked every meal for her and assisted in getting her into bed every night. In 2019, she passed away.
 

The HD battle continues. Jim’s older son tested negative. However, once his daughter (Maddie) was 18-years-old, she wanted to be tested for HD and it came back positive. According to Jim, it was pretty devastating for Maddie but she is determined to help find a cure. She is a constant presence at the University of Iowa.
 
Jim has a message for the HD Community:

“Get support from anywhere you can, stay calm, and take it one day at a time.” 

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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