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Surviving Myotonic Dystrophy
- A Mother’s Struggle to Care for Her Family with a Rare Disease
- ナレーター： Geri Murray
- 再生時間： 5 時間 21 分
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Surviving Myotonic Dystrophy
あらすじ・解説
Surviving Myotonic Dystrophy is about Ann S. Woodbury’s struggle to care for her family who have a rare disease - myotonic dystrophy (DM).
Ann’s four children and her husband have DM. In 1998, at the time of the diagnosis, even the doctors didn’t know all of the effects of DM or that it was a brain disorder.
Listening to this book will take you on a journey of understanding this disease and its effects on Ann’s family members.
Ann also includes tips and lessons learned to help parents/caregivers maintain their own health and peace of mind while caring for loved ones.
You will learn:
- DM is a multi-systemic inherited disease that affects just over one in 2,100 people in the US.
- DM is one of the most variable and complicated of the known disorders.
- How isolating it can be to have a family that doesn’t fit in and how you can better cope with this reality.
- What it means to “take care of yourself”.
- Why you should be mindful about interacting with people whose behavior seems different from yours.