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By Matthew Santamaria (msantamaria@hdsa.org)

For the past eleven years, Jesse Lis has been tested emotionally. Because of Huntington’s disease (HD), she will never see the father that she knew growing up.

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.

When Jesse was younger, she had the perfect childhood. She had an amazing mother and father who raised her with love and praise.

“They guided me and respected me, and I always felt so blessed for our family’s great success,” Jesse explains. “We were such a light hearted, fun-loving family.”

However, by 2008, her father’s demeanor and personality changed. The family wasn’t worried so much as they blamed his quick hot temper on his short stature. It started to worsen as he was struggling with alcoholism and had obvious symptoms of the disease. HD can be described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

“He got himself sober quickly,” Jesse explains. “I always felt that was a true testament of his love for my mother because it was so hard for him to have a release from the anxiety of his ever-changing mind and cognition. Although my dad was sober, he stumbled the way he did when he was drunk, and his words still slurred. He also developed some new ticks…. he would constantly push his glasses up on his nose and aggressively pull his pants up high on his waist when he got excited. He was a little embarrassing in public but still a very loving and kind man.”

As he was getting worse, the family started to dive into their history and see if this is genetic. They reached out to his younger sister as she felt determined and obligated to share the family secret. This secret was never talked about after Jesse’s grandmother passed away. Upon the death of Jesse’s grandmother, her aunt begun to do research and was learning about HD.

“My grandmother was a falsely diagnosed schizophrenic who passed of “prescription complications” in 1992, one year prior to the discovery of the gene that causes Huntington’s and development of genetic HD gene testing.”

Her grandmother’s passing was never discussed, but her aunt did say that her great-uncle suffered with HD as she discovered in her ancestry research. “I had an answer! I was pumped and ready to take him to the doctor to be cured of this horrific, humiliating disease. I wanted to bring my father back to life. But as I continued research, I revealed the unimaginable; there is no cure for Huntington’s disease.”

HD was starting to take over her father mentally and behaviorally. Symptoms include personality changes, depression, impaired judgement, slurred speech, involuntary movements, difficulty swallowing, and significant weight loss.

“He had become loud and obnoxious with waitresses at restaurants,” Jesse explains. “He would start arguments in parking lots with strangers over parking spaces. His driving was completely unsafe and speeding tickets were piling up. He didn’t display chorea in his movements as much.”

“Learning of this disease reaffirmed our non-clinical diagnosis and we gave him an ultimatum to seek medical attention. His mental state continued to decline and he fled in denial and disbelief. He became a danger to himself and to society. We made the choice, along with Medical professionals, to have him committed in a psychiatric ward until he was stable enough for nursing home care.”

Unfortunately, his business was really struggling, partners had left and there was a mountain of debt. “He lost everything he had ever earned during the prime of his life,” Jesse explains. “No one was prepared. My mother lost everything…. Her financial security, her partner. I started to mourn the loss of someone who was still living. I want to always be clear that he is a victim and because of this, I forgive him.”

Her father would come home a few years later as Jesse’s mother took care of him. He was mentally in a good place and her mother was securing herself financially. Then, out of nowhere, Jesse’s children and mother found Jesse’s father on the floor with a note saying “I can’t”.

“He was in and out of the VA hospital receiving non-specific HD care and institutionalized with no coverage,” Jesse explains. “He was too young for Medicaid and put on a two year waiting period to qualify for disability. When his doctors encouraged that he was well enough to come home, he attempted suicide for a second time. This time we knew his fate could not possibly include rehabilitation and we searched for his skilled nursing forever home.”

As for Jesse, she decided it was time to get tested for the disease. 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. Each year, 5-10% of at risk patients get tested.

“I had two young children already, and from a family planning and financial perspective- it just made sense for me to check it off the list,” said Jesse. “I underwent a psychology exam and met with a genetic counselor to ensure I was ready.”

In that same week, her sister decided to be tested as well and both of them tested positive. It was devastating news for the family.

“I realized that I would need external resources to help me navigate my journey,” said Jesse. “I joined HDSA’s Northeast Ohio Chapter and it helped align me with all the necessary tools for me and my family. What an amazing experience this has been for us.”

She has been with the Chapter for the past eleven years and is now the Chapter President. She has overseen many fundraisers and Team Hope Walks. She is also a member of the Cleveland Clinic Advisory Board, one of the 47 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.

Jesse has also been an advocate for the HD Parity Act and has used her voice on Capitol Hill. The bi-partisan bill, now being re-introduced to Congress, ensures that medical coverage is made available to people with HD immediately after qualifying for Social Security Disability Insurance and patients would not have to wait two years to access their Medicare benefits. That can be a lifetime wait for HD patients.

“Your voice matters and makes all the difference! Whether it’s on Capitol Hill advocating with your story for the HD Parity Act, or with pharmaceutical companies advocating for patients and caregivers. I have witnessed action because of my words and perseverance, and it’s a remarkable thing!”

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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. 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 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.