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By Matthew Santamaria (msantamaria@hdsa.org)

Jessica Cunningham moved around a lot. She has since made a home in Texas. She graduated from the University of Texas with a bachelor’s degree in journalism.

Jessica wanted to take a year off from dating and was enjoying life with her friends. While she was living in Boston in 1995, she went to Lutheran church where she met the love of her life, Joe. At the time, he was the leader of the single adult group in church and in the Air Force.

Joe would later become an IRS Agent in Oklahoma and Jessica went with him. They would soon marry and have a daughter and a son. The family would live in Oklahoma for more than fifteen years before moving to Texas in 2010.
 

However, Joe knew that he was at risk of having a disease that could alter his life forever. In 1995, just as Joe and Jessica started dating, Joe’s mother passed away due to complications from Huntington’s disease (HD). This 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.

According to Jessica, Joe had an obsessive-compulsive disorder (OCD). This includes having a tendency towards excessive orderliness, perfectionism, and great attention to detail. Jessica always thought he was like this because of his military background.
 

However, by 2013, his OCD worsened as he was cleaning the same counter repeatedly and clean the paws of their dogs more than once during the day. He also started to have irrational behaviors, disconnecting emotionally, and angry outburst which are signs of HD. This is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously. Other symptoms include depression, forgetfulness, impaired judgement, unsteady gait, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

By the fall of 2015, Joe was refusing to go to a doctor, but Jessica convinced him to go for possible treatment. At a hospital Joe went to, the medical professionals would not acknowledge that his HD symptoms were from HD. They told Jessica and Joe that they were better off going to marriage counseling. It took months for Joe to know that he tested positive 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.

This would put their children at risk for HD. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Jessica’s daughter, attending the University of North Texas in Fall of 2020, does not want to be tested at this time.

In 2016, as Joe’s symptoms were progressing, Jessica was diagnosed with breast cancer. The cancer went to her lymph nodes which led her to go for chemotherapy. This would later work for Jessica and the cancer went away. During this time, this would take a mental toll on the family and this would lead to the family to become closer than ever.

The family worked hard to find the right medication for Joe. Once they found the medication that works best, his mood was getting better. Joe was also involved with the Signal Trial, an investigational approach to early treatment of HD.

While in Oklahoma, Jessica was involved in the HD Community. She would participate in Enroll-HD, worldwide observational study for HD families. It monitors how the disease appears and changes over time in different people. She has also a support group in Oklahoma as well.

Once the family moved to Dallas, Jessica became more involved in the HD Community and became the chairperson for the Greater North Texas Affiliate. She wants to have more yoga events for the affiliate as Jessica has more than fifteen years of experience as a Yoga teacher. Yoga is a great mental outlet for those suffering with HD as well as caregivers.
She has a message for the HD Community:

“Have hope and get involved. There are a lot of great trials to get involved in. Try to make a difference for this horrible disease and find hope.”

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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