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By Matthew Santamaria (msantamaria@hdsa.org)

Utah resident Debra Andrew met her husband Allen through Facebook. The couple dated for about a year and then got married.

Debra understood that her husband was at risk for Huntington’s disease (HD) but loved him and wanted to be there for him through thick and thin.

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.

Allen’s father was misdiagnosed for many years before finally becoming diagnosed with the gene that causes HD. By the time he was diagnosed, his caregivers didn’t want to tell him because he was already in bad shape and didn’t feel the need to tell him by this point in his life. His father was then placed in a facility as he would later pass away due to complications from HD.

According to Debra, Allen is the first generation of his family to be open with HD.

Debra did her research about the disease and learned about Allen’s chances 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.

Six months into their marriage, Debra started to notice symptoms of HD in Andrew. The symptoms of Huntington’s disease 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.

Debra is a health professional and started to observe Allen more closely. Allen was having problems at work and was displaying personality changes as well as mood swings. She would soon suggest to Allen that he needs to be tested for the gene that causes 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.

Allen would learn that he tested positive for HD.

Eventually, Debra would become his main caregiver and would work from home. According to Debra, the family took a financial hit, but Allen’s health was more important. Allen was unable to drive and had a difficult time not working anymore.

As the disease progressed, Allen started to display angry outburst and displayed physical aggressive behavior. In the past, Debra was in an abusive marriage. She learned to keep her distance and knew that the man she still loves is in front of her. She wasn’t going to let HD affect her marriage.

Allen would then go to the University of Utah Center for HD Care. This is one of the 50 HDSA Centers of Excellence that provide an expert 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.
 

As Allen was trying to see what medication would work best for him, he started to see weight gain as a side effect in one of the medications he was taking. It started to make him feel uncomfortable, but Debra assured him that she rather a little weight gain then more HD symptoms.

He would soon find the right mix of medication as sleep has also helped him. According to Debra, she has noticed that Allen engages more as he sleeps more hours.

As the disease progresses, Debra and Allen have learned to adapt and manage. Debra talks to others in the HD community as she wants nobody to feel alone in this battle. She doesn’t want people to be discriminated against because of HD.

Debra and Allen want to live life to the fullest and will not let HD get in the way of that.

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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