Overview

Muscular dystrophy refers to a group of genetic conditions that cause progressive muscle weakness and loss of muscle mass over time. These conditions affect the muscles responsible for movement, posture, and sometimes breathing or heart function. The type, severity, and progression of muscular dystrophy can vary widely from person to person.

A diagnosis of muscular dystrophy does not define a person’s identity, intelligence, or value. While abilities may change over time, individuals continue to grow, connect, and pursue meaningful lives with the right supports in place.

Types of Muscular Dystrophy

There are several forms of muscular dystrophy, including:

• Duchenne Muscular Dystrophy (DMD)

• Becker Muscular Dystrophy

• Limb-Girdle Muscular Dystrophy

• Myotonic Dystrophy

• Facioscapulohumeral Muscular Dystrophy (FSHD)

Each type presents differently and may follow its own progression pattern.

Common Experiences

Individuals with muscular dystrophy may experience:

• Gradual muscle weakness or fatigue

• Difficulty with walking, balance, or coordination

• Use of mobility supports or adaptive equipment

• Changes in endurance over time

• Increased need for assistance with daily activities

Support needs often evolve, and planning for future changes is an important part of care.

Support Looks Different for Everyone

Support for muscular dystrophy focuses on maintaining mobility, comfort, and quality of life. Support may include:

• Physical and occupational therapy

• Mobility aids or assistive technology

• Respiratory or cardiac monitoring, when needed

• Adaptive strategies for daily living

• Coordinated medical care across specialists

Support should be proactive, flexible, and guided by individual goals.

For Families & Caregivers

Families and caregivers often balance medical care, accessibility planning, and emotional support while navigating an evolving condition. The journey may include moments of uncertainty, adjustment, and resilience.

Caregivers deserve compassion, information, and community as they support loved ones along changing pathways.

How Infinity Pathways Supports Muscular Dystrophy

Infinity Pathways creates adaptable tools that help individuals and caregivers communicate changing needs, plan supports, and share important information across settings. Our resources are designed to support dignity, clarity, and confidence—especially as needs shift over time.

A Note on Language

Some individuals prefer person-first language (“person with muscular dystrophy”), while others may identify strongly with a specific diagnosis. At Infinity Pathways, we respect personal preference and aim to use language that honors lived experience.