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Toolkits & Guidelines

Clinical Care Recommendations

MDF offers resources and information for clinicians treating people living with myotonic dystrophy. Be sure to download and share these with your doctors to help educate them about myotonic dystrophy care recommendations and improve the care your family receives.

Below please find:

Pending Consensus-based Care Recommendations:

  • Consensus-based Care Recommendations for Cardiologists Treating Adults with Myotonic Dystrophy Type 1
  • Consensus-based 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, individuals can have severe and life-threatening reactions to anesthesia and image should be monitored carefully whenever anesthesia is administered.

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 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 with congenital and childhood-onset myotonic dystrophy. MDF community members can 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. Email MDF to request a hard copy of the full Guide.

Toolkits

Applying for Social Security Disability Benefits Toolkit: To help meet the needs of MDF families who are applying for U.S. disability benefits, MDF created "Applying for Social Security Disability Benefits", a toolkit created to help individuals and families understand the process of applying for Social Security Administration (SSA) disability benefits. The new toolkit was designed to assist individuals 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 MDF.

MDF Toolkit: Produced by the Myotonic Dystrophy Foundation, MDF has created an easy-to-use toolkit with the guidance of the MDF 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 MDF Toolkit, or download it in the following languages:

Other Publications

MDF Clinic Visit Planner: Planner that enables families to discuss upcoming clinic visits and jot down important questions and information to help ensure that it was shared at the appointment. The Planner is available on the MDF website or by request to MDF.

The Facts: Myotonic Dystrophy, by Prof. Peter Harper, published by Oxford University Press, 2002. A hundred-page book written for families living with myotonic dystrophy, written in easy-to-understand language. A good place to begin educating yourself. Available online at Oxford University Press or Amazon.com. Also included in the MDF Toolkit, hardbound edition.

  • 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)

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.

Myotonic Dystrophy – Present Management, Future Therapy, edited by Prof. Peter Harper, published by Oxford University Press, 2004. A 240-page book written by DM experts from around the world, geared to medical professionals. Highly technical descriptions; great book to own in order to take to medical appointments as specific symptoms arise.

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

Genetic Instabilities and Neurological Diseases, 2nd ed., by Robert D. Wells and Tetsuo Ashizawa, published by Elsevier Academic Press, 2006. Highly technical descriptions.

 

 

 

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