Seth Rotberg was 15 years old when his mother was diagnosed with Huntington’s Disease. The diagnosis brought an end to years of confusion about his mother’s seven-year decline. Once a hardworking homemaker and talented musician, she had become increasingly unsteady, both physically and mentally. Her wobbly movements made her appear drunk at times, something that bewildered and embarrassed Seth. More confusing and frightening were her dramatic mood swings. At one point, she was admitted to a mental health facility, only to discover that mental health issues were only part of the problem.
If you have never heard of Huntington’s disease, you’re not alone. The diagnosis was a mystery to the Rotberg family of Natick too. It is a progressive genetic disorder that causes cells in the brain to break down. It’s been described as Alzheimer’s, Parkinson’s, and ALS all in one by the Huntington’s Disease Society of America. There is no treatment or cure.
“It’s a really intense and complicated position for these young people to be in — to know that I am a caregiver now, and this could be a window to my future.”
Huntington’s is considered a rare disease, affecting close to 30,000 Americans. Because symptoms first appear in mid-life, those affected often have children at home who become caregivers. These children also are at risk of inheriting the disease. Estimates show as many as 200,000 Americans may have a genetic predisposition to Huntington’s Disease.
Seth is one of them. In addition to coming to terms with his mother’s fate, he also had to absorb the reality that he had a 50 percent chance of inheriting the gene that caused her disorder. This is a part of the emotional weight that many young people carry as they live with, and care for, someone with a chronic disease.
“It’s a really intense and complicated position for these young people to be in — to know that I am a caregiver now, and this could be a window to my future,” says Melinda Kavanaugh, associate professor of social work at University of Wisconsin-Milwaukee, who co-authored a 2018 study about young caregivers for parents with Huntington’s.
When Seth first heard about his mother’s diagnosis, he searched “Huntington’s Disease” online and quickly turned the computer off again. “I don’t want to deal with this,” he remembers thinking.
At the beginning, he was mainly preoccupied with his mother’s care and changes from day-to-day. Seth would come home from school or practice to help with whatever she needed. He recalls finding his mother bent over a basket of laundry, her face in her hands, as everyday tasks began to seem impossible for her. Sometimes, to feel normal, he would escape to his friends’ houses.
When he graduated from high school, he worried about going too far away for college and decided to stay close to home and enrolled at the University of Massachusetts. That helped when, during his freshman year, his mother had a fall that resulted in a hospital stay, then rehab, then a nursing home. She was lonely there, and he recalls how intently she looked forward to his visits during that time.
But for Seth, it became harder and harder to visit. During his sophomore year of college, he had summoned the courage to walk into a doctor’s office. He left that day with a heavy secret. He had tested positive for Huntington’s. He was stunned. The only thing he knew for certain at the time was that he did not want to tell his family.
While a genetic test for Huntington’s has been widely available for decades, only a small number choose to take the test. That’s partly because there’s nothing to hope for if the test comes back positive. Many DNA tests indicate only an increased likelihood for developing a genetic disorder — the BRCA gene for breast cancer, for example, or the APOE gene for Alzheimer’s. With Huntington’s, anyone who inherits a mutation of the so-called Huntington gene will develop symptoms of the disease.
Seth, a consummate planner, decided he wanted to know.
But knowing made it all the harder to see his mother as she struggled and continued to decline, so he became more distant. He was also saddened by the reality that he was limited in how he could help: “I could not reverse the disease or come up with a cure,” he said.
To push back against this feeling of helplessness and guilt, he got involved with groups that support and advocate for youth and families impacted by Huntington’s. His first event was a basketball fundraiser he organized for research to slow the progression of the disease. Getting involved was therapeutic. He made close friends that he could confide in, friends who understood what it was like to have a parent with a rare disease or to grapple with a diagnosis.
Eventually, he realized he could make a bigger impact by going public about his diagnosis and sharing his experiences. But to do that, he had to tell his family.
When he did, they were calm and supportive. Then he felt free to tell the world and began giving speeches at Huntington’s Disease conferences and other events to inspire people in the rare disease community to advocate for themselves and others.
He says it’s an exciting time with so many clinical trials and advancements happening. But he advocates to make sure that young people have the resources to get their voices heard when it comes to research. “We are going to be the ones taking the treatments,” he says. “What are our needs?”
When he thinks about his future, he walks a fine line. It’s important, he says, to be both “realistic and optimistic.”
Seth’s mother died four years ago. Seth now lives in Washington, D.C. and is committed to making the experience of living with Huntington’s different for him and for his generation. His newest project is an organization called Our Odyssey that connects young adults impacted by a rare or chronic condition with social and emotional support. He hopes that no one has to feel alone in this experience, especially when there is so much inspiration and support within the rare disease community.
“I am fighting for my friends,” Seth says. “That is why I share my story.”