Myotonic Dystrophy Type 1 (MD1) Guideline

Myotonic Dystrophy Type 1 (MD1), also known as Dystrophia Myotonica, is a hereditary condition. The abbreviations MD1 and DM1 are used interchangeably for this disorder. Symptoms of MD1 include delayed relaxation of contracted muscles (myotonia) and gradually worsening muscle weakness (dystrophy). In addition to muscles, organs can also be affected, leading to symptoms such as fatigue and an increased need for sleep. Children with MD1 may experience learning and behavioral problems. MD1 is a rare condition, affecting approximately 1 in 8,000 people. It occurs equally in men and women. If one parent has the condition, each child has a 50% chance of inheriting it.

Purpose of the Guideline

This guideline outlines the best practices for the care of patients with MD1 based on current standards. It is intended for all healthcare providers involved in the care of individuals with MD1.

The guideline addresses the following topics:

• Coordination of care and patient education
• Neurological care
• Cardiological care
• Respiratory care
• Gastrointestinal care
• Perioperative care

The guideline for Myotonic Dystrophy Type 1 is available in the guideline database of the Federation of Medical Specialists (FMS).

Additional Information

Both the guideline and patient-focused information can also be found on the website of the MD Expertise Center.