While Mark has been living with essential tremor (ET) for more than 40 years, his condition has grown progressively worse for the last three decades, creating significant problems in his day-to-day life. As a middle school teacher, he found it increasingly challenging to complete simple tasks, like writing on the board or grading papers.
ET — the most common movement disorder in the U.S. characterized by involuntary shaking or trembling most often in the hands or arms — affects more than ten million people in the U.S.1,2 In addition to significant daily disruptions, the condition can also impact a person’s social interactions.1
While Mark initially tried to hide his shaking, his students noticed and occasionally asked if he was sick. Sensing their concern and wanting to be honest, Mark decided to open up to his class about the challenges of ET. Rather than be worried, he told his students he wanted them to understand that having a medical condition doesn’t have to stop a person from living a full and happy life. His students responded with a heart-warming display of support, offering to help Mark hand out papers, write on the board and even type up documents when he had trouble using his keyboard.
The more Mark discussed his ET with the people around him, the more he wondered about where — or, more specifically, whom — his condition initially came from. Studies show there’s a nearly 70% chance of a child inheriting ET from a parent who has it,3 yet because Mark was adopted as a baby, he had no connection to his biological parents.
When both of his adopted parents passed away, Mark found himself feeling more alone than ever, with his ET symptoms growing worse. As a result, he decided to send a DNA sample to a genetic testing company to learn more about his family’s health and hopefully find some answers. What he got in response was more than he’d bargained for: seven siblings and 37 nieces and nephews!
While connecting with his new family, Mark asked about ET, and one of his sisters started to cry. She told him that her children had struggled with ET all their lives, and the condition had caused a lot of stress for them in school and at work.
In another twist of fate, Mark found the maternal side of his family one and a half years later, including an aunt and five first cousins, and he discovered that tremors were a prominent health concern with them, as well.
Mark no longer felt alone. He was able to trace his ET to both sides of his biological family, learning that his mother, aunt, two grandparents, several siblings and a number of nieces and nephews experienced many of the same challenges he did.
In addition to uncovering his biological family’s shared ET past, he also discovered that there was a significant history of heart disease within the family. This ultimately led him to get tested, despite being completely asymptomatic. To his surprise, the testing revealed a massive blockage in one of his arteries, causing him to receive immediate surgical intervention. Not only did finding his family change Mark’s life for the better, but it also simultaneously saved his life.
Mark continues to share his story with fellow ET patients and their caregivers at the Detroit Area ET Support Group, where he has been a member for nearly 20 years. He was also connected with the International Essential Tremor Foundation, where he has had the opportunity to speak about his unique diagnosis journey, and the familial aspect of the condition.
While living with a debilitating movement disorder continues to present its share of disruptions, Mark feels that it has also shaped him into the person he is today. He is moved by the empathy and understanding he received from his students and is grateful for the information he obtained from his newly discovered family about what it’s like to live with this chronic condition. He never would have guessed that his decision to take control and learn more about his ET would help him find roots he didn’t know he had.
1MedlinePlus. National Library of Medicine (US). Essential Tremor; Frequency. https://medlineplus.gov/genetics/condition/essential-tremor/#frequency. Accessed March 11, 2021.
2National Organization for Rare Disorders. Essential Tremor. https://rarediseases.org/rare-diseases/essential-tremor/#symptoms. Accessed March 11, 2021.
3Clark, L. N., & Louis, E. D. (2015). Challenges in essential tremor genetics. Revue Neurologique, 171(6-7), 466–474. https://doi.org/10.1016/j.neurol.2015.02.015
