Table of Contents
Myotonic Dystrophy Type 1: A Guide for Individuals and Families
Whether you are newly diagnosed or have been living with DM1 for some time, this guide is designed to help you better understand the condition, prepare for medical care, and navigate daily life.
The guide was created by the Myotonic Dystrophy Foundation (MDF). The content has undergone extensive review by medical and scientific experts and members of the DM community.
The DM1 Guide is a core resource in the updated MDF Toolkit.
What’s Inside the DM1 Guide
- Understanding Myotonic Dystrophy: What DM1 is, how it occurs, how it is diagnosed, and how it may progress.
- How DM1 Affects the Body: Overviews of effects on skeletal muscles, the heart, lungs, digestive system, central nervous system, reproductive and endocrine systems, immune system, and vision.
- Anesthesia Safety: Key information to help you and your healthcare providers plan safely for procedures.
- Daily Life & Modifications: Practical guidance on occupational and physical therapy, employment, nutrition, swallowing, speech therapy, and sleep.
- Building Your Care Team: Tips for working with a coordinated team of healthcare providers from different specialties.
- Family Planning: Information to support decisions around genetics and pregnancy.
- Intimacy: Supportive, respectful guidance on relationships, sexual health, and communication.
- Legal Decisions: Information about planning for future healthcare and financial decisions, including guardianship, power of attorney, and supported decision-making.
- Insurance and Financial Resources: Helpful information about insurance, benefits, and financial support.
- MDF Support: Ways MDF can support you through education, programs, and community connections.
Help Us Improve the DM1 Guide
We want to hear from you! Please use your survey to share suggestions, report an error, or let us know what could be clearer. Your feedback will help us make updates as we prepare the printed version.
