Myotonic Dystrophy: Family Stories
Published on
Tue, 03/06/2018
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.
Published on
Tue, 02/06/2018
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.
Published on
Tue, 12/05/2017
Tom McPeek was an award-winning dog trainer and a corrections professional before his DM2 kicked in.
Published on
Wed, 06/07/2017
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.
Published on
Thu, 04/13/2017
The personal essay was written by Alex Wiggans, the grandson of Myotonic community members Dr. Glen Wiggans and Marlo Wiggans.
Published on
Thu, 04/13/2017
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.
Published on
Tue, 01/24/2017
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.
Published on
Fri, 01/20/2017
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!
Published on
Sat, 10/01/2016
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.
Published on
Fri, 08/19/2016
Acclaimed musician Eric Hutchinson is using his new album to support Care and a Cure. Read his inspiring family story.