Myotonic Dystrophy: Toolkits & Publications

Medical professionals are often unfamiliar with myotonic dystrophy (DM) because they see these cases so infrequently. That’s why we created informational toolkits and reference guides for clinicians treating people living with DM. Please download and share these resources with your doctors to help educate them about myotonic dystrophy care recommendations and improve the care your family receives.

If you would like an introduction to resources and support options for myotonic dystrophy, please watch the following presentation to familiarize yourself with the various programs that are available. Slides for the DM Resource presentation are available to download (PDF).

Respiratory Care Recommendations for Myotonic Dystrophy Patients During the COVID-19 Pandemic

Clinical Care Recommendations for Adults with Myotonic Dystrophy Type 1

Clinical Care Recommendations for Children with Myotonic Dystrophy Type 1

Clinical Care Recommendations for Adults with Myotonic Dystrophy Type 2

Clinical Care Recommendations for Cardiologists Treating Adults with Myotonic Dystrophy Type 1

Clinical Care Recommendations for Pulmonologists Treating Adults with Myotonic Dystrophy Type 1:

Guidelines

Anesthesia Guidelines:  Regardless of the form of DM or the severity of DM symptoms experienced, you can have severe and life-threatening reactions to anesthesia and should be monitored carefully whenever anesthesia is administered. Download the short one-page Anesthesia Quick Reference Guide to share with your clinician and anesthesiologist.

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. Myotonic 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. You can also email us at Myotonic to request a hard copy of the full Guide.

Occupational Therapy Guidelines: A quick reference excerpt for clinicians from the full Myotonic Toolkit (see link below). Occupational therapy is a health profession focused on enabling people to participate in activities of daily living that give meaning and purpose to their lives.

UPDATED! Role of Physical Therapy in the Assessment and Management of Individuals with Myotonic Dystrophy: Most individuals living with myotonic dystrophy (DM) will probably first encounter a physical therapist in the multidisciplinary clinic where they receive care. These Physical Therapy Guidelines for DM address the role that the physical therapist plays in DM care, including evaluation, education, instructions and physical movement recommendations.

NEW! Exercise Guide for Individuals with Myotonic Dystrophy: This guide is written by two physical therapists who are specialized in working with individuals 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.

NEW! Health Insurance Considerations for People Living with Myotonic Dystrophy in the United States: Myotonic created this resource guide to help you navigate the process of making sure your medical treatments and medications are covered, as well as understand how to appeal your claim if it’s 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.

NEW! Nutrition Guide for Individuals with Myotonic Dystrophy: This guide is written and reviewed by nutritionists who are 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.

NEW! Care Guidelines for Speech and Language Pathologists Treating Adults and Children with Myotonic Dystrophy: This guide is written and reviewed by an international group of speech and language pathologists who are specialized in working with adults and children with DM. The guidelines include information on assessment, diagnosis, and therapy for speech, swallowing and language needs related to DM.

NEW! 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. You can also email us at Myotonic to request a hard copy of the full Guide.

Toolkits for Download

Myotonic Toolkit: Myotonic has created an easy-to-use toolkit with the guidance of the Myotonic Scientific Advisory Committee. The Toolkit includes valuable information for affected individuals and their families and resources for medical professionals. Order a hard copy of the Myotonic Toolkit, or download it in the following languages:

Applying for Social Security Disability Benefits Toolkit: To help meet the needs of the Myotonic community who are applying for U.S. disability benefits, Myotonic 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. To order a hard copy of the toolkit "Applying for Social Security Disability Benefits", send an email to Myotonic.

NEW! Employment Access Toolkit: A Guide to Navigating the Employment Process for People Living with Myotonic Dystrophy: Myotonic 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. To order a hard copy of the "Employment Access Toolkit", send an email to Myotonic at Leah.Hellerstein@myotonic.org.

Other Publications

Myotonic My Clinic Visit PlannerThis planner enables families to discuss upcoming clinic visits and jot down important questions and information to help ensure it is covered at the appointment. The Planner is available to download or by request to Myotonic.

The Christopher Project Report: Report to the Myotonic Dystrophy Community: In order to better understand their needs, the Christopher Project asked patients with myotonic dystrophy and their family members/caregivers to report directly on their own experiences, from their own perspective, as experts in their own right. This report complements existing research and offers important, new insight into the myotonic dystrophy experience. To request a hard copy of the report, send an email to Myotonic.

Family Letter: These letters to newly diagnosed families were written by clinicians at the University of Iowa who describe DM, how it is inherited, 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.

The Facts: Myotonic Dystrophy, by Prof. Peter Harper, published by Oxford University Press, 2002. This hundred-page book is written in easy-to-understand language for families affected by myotonic dystrophy. It’s a good place to begin educating yourself. Available online at Oxford University Press or Amazon.com.

  • Les Faits (version française / French version)
  • I Fatti (versione italiana / Italian version)
  • Os Factos (versão em português / Portuguese version)
  • Los Hechos (versión española / Spanish version)

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

Myotonic Dystrophy – Present Management, Future Therapy, edited by Prof. Peter Harper, published by Oxford University Press, 2004. This 240-page book written by DM experts from around the world is geared to medical professionals. It includes highly technical descriptions and is a good book to take to medical appointments as specific symptoms arise.

Myotonic Dystrophy, 3rd Edition, by Prof. Peter Harper, published by W.B. Saunders, 2001. This 400-page book on DM is written for medical professionals. The descriptions are highly technical.

Genetic Instabilities and Neurological Diseases, 2nd ed., by Robert D. Wells and Tetsuo Ashizawa, published by Elsevier Academic Press, 2006. This book is written for medical professionals and the descriptions are highly technical.

Myotonic Publishes Article in Therapeutic Innovation and Regulatory Science - This publication generated by Myotonic, titled "Patient-Centered Therapy Development for Myotonic Dystrophy: Report of Myotonic–Sponsored Workshop (pdf)," was published in Therapeutic Innovation and Regulatory Science. The report examines the status of biomarker, endpoint and clinical trial design for myotonic dystrophy therapy development, and lays the groundwork for the inclusion of the patient and caregiver voice in DM therapy development. It also includes a report on the Benefits and Risks Study Myotonic conducted with Silicon Valley Research Group.

Myotonic Releases Voice of the Patient Report on the Myotonic Dystrophy Patient-Focused Drug Development Externally-Led Meeting - This report summarizes patient and caregiver input on the disease burden of myotonic dystrophy types 1 and 2, and what specific symptoms most impact their daily lives. It also provides patient and caregiver perspectives on what clinically meaningful benefits would be for future DM therapies. Access the DM Voice of the Patient Report and the FDA submission letter. Watch videos of the meeting here and here.

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