For Providers | Myotonic Dystrophy Foundation

These publications are for professional audiences – especially doctors and nurses – who treat and care for individuals living with DM. MDF urges families to share these resources with their providers.

Practical Suggestions for the Anesthetic Management of a Myotonic Dystrophy Patient

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.
Anesthesia Guidelines for Japan: View the Practical Guideline for Dystrophia Myotonica (DM) 2020, © Societas Neurologica Japonica, 2020, Published by Nankodo Co., Ltd., Tokyo, 2020.
German - Praktische Hinweise für das Narkose-/Anästhesie Management eines Patienten mit Myotoner Dystrophie Typ 1. Translated in partnership with DGM, the German Society for Muscle Diseases.
Spanish - Recomendaciones para el Manejo de la Anestesia en los Pacientes con Distrofia Miotónica. Traducido en colaboración con Dres Adolfo López de Munain y Juan J Vilchez.

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

Respiratory Care Recommendations for Myotonic Dystrophy Patients During the COVID-19 Pandemic: We understand that this is a very challenging time and we would like to provide tips for patients, caregivers, and medical providers on the use of noninvasive positive pressure ventilation (NIPPV) if you have been exposed to this virus or have symptoms of COVID-19 infection. Please remember to follow CDC guidelines to help stay healthy and to first call or use telemedicine if you have questions for your doctor. Learn more about the recommendations here.
French - Assistance pulmonaire pour les patients atteints de dystrophie myotonique durant la pandémie de COVID-19: Les directives spécifiques pour les patients atteints de dystrophie myotonique et leurs médecins en cas d’infection par COVID-19, crées par MDF et traduites par NMD4C.

Clinical Care Recommendations for Adults with Myotonic Dystrophy Type 1

Clinical Care Recommendations for Children with Myotonic Dystrophy Type 1

English - Consensus-based Care Recommendations for Congenital or Childhood-onset Myotonic Dystrophy Type 1 and Quick Reference Guide
Spanish - Recomendaciones por consenso para el cuidado de niños con distrofia miotónica tipo 1
Swedish - Konsensusbaserade vårdrekommendationer för barn med myotonisk Dystrofi Typ 1 and Quick Reference Guide

Clinical Care Recommendations for Adults with Myotonic Dystrophy Type 2

English - Consensus-based Care Recommendations for Adults with Myotonic Dystrophy Type 2 and Quick Reference Guide
German - Konsensbasierte Behandlungsempfehlungen für erwachsene Patienten mit Myotoner Dystrophie Typ 2
Spanish - Recomendaciones por consenso para el cuidado de adultos con distrofia miotónica tipo 2 and Spanish Quick Reference Guide

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

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

Occupational Therapy Suggestions for the Management of a Myotonic Dystrophy Patient

Occupational Therapy Guidelines: A quick reference excerpt for clinicians from the full MDF Toolkit (see link above). 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.

The Role of Physical Therapy in the Assessment and Management of Individuals with Myotonic Dystrophy

Physical Therapy Guidelines: 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.

Care Guidelines for Speech and Language Pathologists Treating Adults and Children with Myotonic Dystrophy

Speech and Language Pathologists Guidelines: 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.

Clinical Recommendations for People of Pregnancy Potential with Myotonic Dystrophy

Clinical Recommendations for People of Pregnancy Potential with Myotonic Dystrophy: This resource is designed to provide clinicians with an overview of risks and care recommendations for individuals living with myotonic dystrophy (DM) who are pregnant or considering pregnancy. Because DM is a highly variable and multi-systemic disease, it is important to conduct individual risk assessments on a case-by-case basis. Additionally, due to the myriad manifestations and severities of DM, this document describes a variety of outcomes that may or may not be applicable to a patient.
Spanish - Recomendaciones clínicas para personas con distrofia miotónica en edad fértil