Stories

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 MDF shortly after her diagnosis.

The Lundys find support and a new community of friends by launching a support group in Ottawa, Ontario.

Craig Evans of Abington, Pennsylvania, talked to MDF about his family’s journey with DM. As Father’s Day approaches we are pleased to share this father’s story.
 

“My condition is not who I am. It does not define me.” This is one of many affirmations that Amy Ream adopted after being diagnosed with myotonic dystrophy 17 years ago.

“I’ve been obsessed about retaining my quality of life, and being stubborn has benefitted me greatly,” states Amy. Her determination became obvious when she shared her story with MDF. Click here to read the rest of Amy's story.

Erich Maurer grew up in a small farming village in northern Switzerland. His mother was diagnosed with DM1 after complications from a surgical procedure.

Loraine Dressler, her daughter Kristl, and grandson Zen are all living with DM. Loraine shared with us the satisfaction she gets from being the primary caregiver for Kristl and Zen and how a diagnosis of DM gave her daughter the freedom to be herself.

Rupp Brothers

Regina Thompson grew up near Nashville, TN, feeling different. Not because she was diagnosed with myotonic dystrophy (DM), but because she was the only one of seven children who wasn’t. And, she was the only girl.

Jessica Flynn, 26, grew up with a mother and twin sisters who all live with myotonic dystrophy; her mother has adult onset DM, and her sisters have congenital DM. Although Jessica hasn’t experienced any symptoms, she’s in the process of getting tested to determine if she’s a carrier. Jessica often hears the comment, “It must have been so hard growing up with family members affected by DM,” but she didn’t see it as a burden or a problem, it was just her normal life.

Diane Bade’s three children — Scott, Nicholas, and Christine -- have myotonic dystrophy, as did her husband, Chris Bade, who passed away in 2005. Though not affected herself, Diane, like many parents and spouses, works tirelessly to educate herself, her family and her community.

Sisters Mary Dowdle (37) and Caroline Easterling (39)  live in neighboring states: Maryland and Virginia, respectively. Both women live with myotonic dystrophy type 1, as did their father, grandfather and great grandfather.

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