For Individuals Living with DM & Caregivers

These publications are for a general audience to help understand the condition and various aspects of life with DM.

*New* Myotonic Dystrophy and Mental Health Handbook: This handbook aims to provide information on many of the ways mental health can be impacted by DM. Although DM has the potential to impact cognitive health and development, this resource emphasizes the social and emotional impact of the disease. We hope to give the reader an overview of possible mental health issues that may affect people living with DM and potential resources.

MDF Toolkit: This comprehensive guide for individuals with DM and their families was created by MDF staff & volunteers under the guidance of the MDF Scientific Advisory Committee. The Toolkit includes valuable information for people living with myotonic dystrophy and their families as well as resources for medical professionals. The Toolkit explains the genetics, diagnosis, symptoms, care management, and more covering all forms and manifestations of DM. Click here to order a print copy of the English version of the MDF Toolkit!

The Toolkit contains a health supervision checklist and is available in the following languages:

MDF Medical Alert Card: Patients with myotonic dystrophy often exhibit adverse reactions to sedatives, anesthetics, and neuromuscular blocking agents. Serious complications and fatalities can be avoided by careful preoperative assessment, avoidance of certain drugs, careful monitoring and good postoperative patient care throughout their hospitalization. Ensure your emergency responders follow these critical guidelines with the MDF Medical Alert Card!

MDF My Clinic Visit Planner: This planner enables families to discuss upcoming clinic visits and jot down important questions and information to help ensure it is covered at the appointment.

Family Letter: These letters to newly diagnosed families were written by clinicians at the University of Iowa to describe DM, how it is inherited, the risks associated with the condition, and how to get testing if desired. We encourage you to provide a copy of this letter to your physician.

Going to School with Myotonic Dystrophy: A Guide to Understanding Special Education and IDEA: This comprehensive resource helps parents and family members take advantage of the Individuals with Disabilities Act (IDEA) that governs programs and services for children living with disorders like myotonic dystrophy. The Guide covers services and mandates for ages newborn through 21, and provides guidance, tips and resources for parents and caregivers of children living with congenital and childhood-onset myotonic dystrophy. MDF community members use the Guide to create the best possible experience for their children as they transition from pre-school to primary and secondary education, and into young adulthood. Download the short Guide to Myotonic Dystrophy for School Professionals.

Exercise Guide for Individuals with Myotonic Dystrophy: This guide is written by two physical therapists specialized in working with individuals living with DM, and includes information on the benefits of exercise for DM, recommendations on aerobic activity, types of exercise, monitoring exercise, exercise strategies and finding motivation.

Health Insurance Considerations for People Living with Myotonic Dystrophy in the United States: MDF created this resource to help you navigate the process of making sure your medical treatments and medications are covered, and how to appeal your claim if it is denied. We hope that this guide will enable you to advocate for the delivery of healthcare services and treatments that enhance your health and well-being and that of all people living with DM.

Nutrition Guide for Individuals with Myotonic Dystrophy: This guide is written and reviewed by nutritionists specialized in working with individuals with DM, and includes information on diet and DM, managing constipation, being overweight/underweight with DM, managing swallowing problems, feeding tubes, supplements, and sample meals.

MDF Cooks: A recipe book for those with dysphagia, other swallowing disorders, or difficulty chewing. These recipes were all submitted by MDF community members and tested by a nutritionist.

Guide for Adults Affected by Juvenile-onset (JOA) Myotonic Dystrophy and their Caregivers: This Guide was developed as part of the comprehensive Juvenile-onset Adult support program, to help improve the quality of life of those affected by juvenile-onset DM and their caregivers. This Guide is specifically designed to help families affected by juvenile-onset DM understand how to manage their lives, especially at transition points in development and education.

Applying for Social Security Disability Benefits Toolkit: To help meet the needs of people living with myotonic dystrophy who are applying for U.S. disability benefits, MDF created "Applying for Social Security Disability Benefits", a toolkit created to help you understand the process of applying for Social Security Administration (SSA) disability benefits. The toolkit was designed to assist those affected by myotonic dystrophy in navigating the application process for Social Security Disability Insurance (SSDI) benefits and Supplemental Security Income (SSI) benefits.

Employment Access Toolkit: A Guide to Navigating the Employment Process for People Living with Myotonic Dystrophy: MDF created this Toolkit to help individuals navigate the employment process and includes information on how DM can affect your job, how to assess your readiness to work, how to search and apply for a job, how to write a resume and cover letter, tips for interviewing and much more.