Laura Gershenson: Giving Back to the DM Community

Published on Tue, 08/26/2014

Laura Gershenson is a high school science teacher, wife, and mother of two small children living in Dallas, Texas. She was diagnosed with DM in 2011 and found her way to Myotonic shortly after her diagnosis. 

Like many Myotonic community members, Laura’s DM symptoms began long before she was diagnosed. From a young age Laura suffered from irritable bowel syndrome (IBS) and, like her father, contracted early-onset cataracts. At the time, she and her family believed that her cataracts were just a hereditary anomaly. 

It wasn't until after Laura and her husband Eli had had children that they began to notice that Laura was becoming particularly clumsy. She found she was dropping dishes, struggling to open doors and jar lids, and having trouble pumping gas. Her hands were far too weak for someone of her age and physical ability. Visits to various specialists were not helpful; on one occasion a doctor told Laura that "short tendons” were the cause of her muscle weakness. It wasn’t until Laura’s physical therapist suspected DM that she was able to get a correct diagnosis. 

Laura says she feels very lucky to have a community of loving supporters around her, and is glad she sought professional counseling at the time of her diagnosis, as it helped her learn to adjust and accept. Laura doesn’t keep her DM a secret. All her students know and they are happy to help her, carrying supplies and opening bottles. “I just wouldn’t be able to teach science without their help,” she says. Laura encourages her students to ask her questions about DM, and her senior anatomy classes study muscle diseases as part of their curriculum. Students create brochures on a muscle disorder and many choose DM for their assignment. Laura jokes, “I grade those especially hard!” 

Laura is very optimistic about the future of DM research and believes that “every day brings new hope for a cure.” In the meantime she tries to look beyond her limitations and acknowledge what she has in her life. She works hard to stay physically fit and says, “You really have to make taking care of yourself a priority.”

Though Laura is incredibly busy, she volunteers on behalf of others in the DM community as a member of TeamMyotonic. In April, Laura held her second Dine Out for DM event at a local restaurant. Over the past two years she's raised visibility for myotonic dystrophy and over $1,000! In addition to her friends, family and colleagues, some of her students and their parents attended. “It was heartwarming to have their support,” she says. 

Raising the visibility of myotonic dystrophy and DM community needs plays an important role in driving Care and a Cure. “Grassroots campaigns like Laura's are the cornerstone of Myotonic’s advocacy efforts,” explains Aly Galloway, Myotonic Community Engagement Manager. “We need to build awareness and support for our issues with local, state and federal governments. Our community members are critical to Myotonic's efforts to educate the public about DM and the needs of affected local community members."

For Laura and her family, staying positive and looking ahead are primary coping strategies. “One day at a time is a healthy way to approach things, and every day can bring positive developments. I participate in studies to help further research.  No one wants to have a chronic disease, but it doesn’t need to define you.  You need to see beyond the diagnosis to the things in your life that matter so much more.”