Myotonic Dystrophy: Family Stories

Ask Israel Dubin about himself, and he’ll tell you he’s a Jewish, 65-year-old retired judge, father of three wonderful adult children, and husband to a great wife. What he’s likely not to mention is that he has myotonic dystrophy type 2 (DM2).

As Matthew Brown listened to his cousin Emily describe the symptoms that led to doctors diagnosing her with having multiple sclerosis, he grew concerned. The problems she described—an inability to relax her hand, a freezing of her tongue that made it impossible to talk at times, and gastrointestinal issues—were the same ones he had been experiencing.

Linda Marshall has written a moving overview of her struggles to find a diagnosis for the problems her children faced, and the particular impact of brain-related symptoms on her family.

Tom McPeek was an award-winning dog trainer and a corrections professional before his DM2 kicked in.

Susannah is a 48-year-old entrepreneur with her own real estate law practice. She also has two teenagers that keep her busy at home, and she helps care for her mother. Susannah also has DM1.

The personal essay was written by Alex Wiggans, the grandson of Myotonic community members Dr. Glen Wiggans and Marlo Wiggans.

Even though Donna Boulmay spent a career as a nurse before retiring, she lived most of her adult life in the midst of a medical mystery that had shaped much of her family’s existence. That changed shortly after her grandson Jackson turned five years old.

Participation in research studies and clinical trials is critical to finding therapies for myotonic dystrophy. As part of the Every Body Counts! campaign, Myotonic will highlight DM community members who have proactively participated in research studies and clinical trials. Read about Zenica Sanford.

Mary Dowdle, a community member living in Virginia, says that participating in research has been a great way to feel like she's contributing to Care and a Cure for DM, and it's been interesting too! 

Sarah and David Berman had never heard of myotonic dystrophy until their baby Zoé was born with the congenital-onset form of the disease, which is known as CDM.

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