Mother of Four Kids Who Have a Rare, Incurable Disease Pens Surviving Myotonic Dystrophy, to Help Other Families Cope
A progressive disease often missed, DM sufferers may seem apathetic or lazy
Jan 12, 2021, 08:34 ET
SALT LAKE CITY, Jan. 12, 2021 /PRNewswire/ -- Having one child with a rare, incurable and often misunderstood genetic disease is tough enough but Ann S. Woodbury has four children — and a husband — with myotonic dystrophy (Dystrophia Myotonica, DM), a disease that is characterized by progressive muscle wasting and weakness. Ever since their diagnosis in 1998, Woodbury has been advocating for families like hers and educating physicians about the symptoms that can vary from individual to individual and affect multiple organs.
Woodbury, who for many years helmed a statewide support group in Utah for people with DM, has just released a new book, Surviving Myotonic Dystrophy, to bring greater awareness of the devastating disease to the public and health professionals.
In the book's foreword, Jacinda Sampson, M.D., Ph.D., who treated the family, wrote about the disease that strikes one in 2,100 Americans: "DM is more than a muscle disease, it has implications for the whole body and affects every individual differently — from the floppy (hypotonic) infant to the unsuspecting grandparent. I learned that DM is often quite devastating, not only because it affects the functions of so many organs and systems in the human body, but also because many people who have this disease can live with it and go undiagnosed with it for years. Some estimate that as many as 50% of those with this disease remain undiagnosed instead of being treated for the disease."
In an interview, Woodbury can discuss:
- The range of symptoms patients exhibit and the organs it affects
- How before their diagnoses her children's symptoms alienated her from her church and community
- Tips for caregivers and what it means to "take care of yourself"
- Why we should all be mindful of interacting with people whose behavior seems "different"
Praise for Surviving Myotonic Dystrophy
"In Surviving Myotonic Dystrophy, Ann S. Woodbury describes very well the presence and impact of the features of DM. These features include sleepiness, cognitive impairment and apathy. Information and practical advice on this topic are very scarce or simply nonexistent for this disease. Through Ann's book, caregivers and relatives can get a greater understanding of the neurobehavioral symptoms typical of DM and be more efficient in helping patients help themselves." — Benjamin Gallais, Psychologue Ph.D., chercheur (researcher), Jonquière, Québec, Canada
"What a story Ann has shared! Allowing the reader into her life takes courage. Many will benefit from reading her journey." — Maria Gurrister, M.S. CCCSLP, Wasatch Speech and Language Center
"I am a lead geneticist at the University of Utah, where we had just completed a two-year research project that revealed that Myotonic Dystrophy (DM) occurs at the rate of just over 1 in every 2,100 individuals. I knew the science behind the disease but reading Ann's book Surviving Myotonic Dystrophy taught me about the real people who deal with this disorder on a daily basis. Learning about their day-to-day lives has given me renewed meaning for my research."— Diane Dunn, senior research specialist, University of Utah
About the author
Ann S. Woodbury has been caregiving and advocating for her family since their diagnoses in 1998, at a time when even doctors didn't know all of the effects of DM or that it was a brain disorder. She has shared her knowledge of the disease and its treatment as the former head of Utah's DM support group. Surviving Myotonic Dystrophy is her first book.
Contact: Ann S. Woodbury, (801) 554-1258; [email protected]; www.annswoodbury.com
SOURCE Ann S. Woodbury
