“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.
Myotonic Dystrophy: Family Stories
Erich Maurer grew up in a small farming village in northern Switzerland. His mother was diagnosed with DM1 after complications from a surgical procedure.
Val Reeber - who is living with DM2 - and her husband and caregiver Bob share their story, and how DM2 has impacted their family.
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 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.Jessica 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.
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 and Caroline Easterling live in neighboring states: Maryland and Virginia, respectively. Both women live with myotonic dystrophy type 1, as did their father, grandfather and great grandfather.
When Marty Benner’s granddaughter, Sophia, was born in November 2006, the doctors and nurses immediately knew something wasn’t right. She was put on life support while they monitored and tested her, yet more than a month later, they still couldn’t figure out what was wrong.
Though their journey has been bumpy, and at times scary, Cecilia Stearns, Danielle and the twins, Matthew and Jonathan, are finding their way by seeking out the support and services they need and learning to take life one day at a time.