The MDF went to Washington, DC, last week to represent the DM community and participate in the Rare Disease Legislative Advocates Conference and Lobby Day.
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.
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.
Mollie McKool discovered that her family was affected by DM1 the way so many families do: when her daughter Kristen gave birth.
“Our family’s story begins when my undiagnosed daughter, Danielle, almost died giving birth and one of her twins had an initial APGAR score of zero.
Shannon Lord, MDF's founding chairman, passed away on June 4, 2013. Shannon had a mild form of DM1 and her two grown sons have childhood-onset DM.