Muscular dystrophy life expectancy

Muscular dystrophy life expectancy varies depending on the disease type and other factors.

While all types of the genetic muscle-wasting disorder cause symptoms of muscle weakness, some forms progress more quickly and are more severe than others. Thus, people with certain types of muscular dystrophy, or MD, may have a reduced life expectancy, while others have a normal lifespan.

Although there isn’t a cure for MD, better treatment options have led to a more favorable prognosis in recent decades.

What factors affect muscular dystrophy life expectancy?

Many factors can influence life expectancy, disability, quality of life, and other aspects of MD prognosis. Factors affecting prognosis may include:

• disease type: disease severity and progression vary between MD types
• mutation: within some disease types, different genetic variants may affect prognosis
• diagnosis age and treatment initiation: early diagnosis and treatment may improve outcomes
• treatment approach: in some MD types, there are approved therapies that can slow disease progression and prolong life expectancy
• breathing problems: weakness in the muscles that support breathing can cause respiratory complications, which may reduce life expectancy
• heart problems: other complications affecting life expectancy stem from heart muscle weakness, which can lead to heart failure, a major cause of death in some MD types

Muscular dystrophy life expectancy by type

Different types of MD progress at different rates, affect distinct muscle groups, and can impact life expectancy in different ways:

• Duchenne muscular dystrophy (DMD): typically progresses quickly and decreases lifespan, although prognosis can improve with treatment
• Becker muscular dystrophy (BMD): usually progresses at a slower pace than DMD, and many patients survive into adulthood
• myotonic dystrophy: type 1 progresses more quickly than type 2 and can have a greater impact on lifespan
• facioscapulohumeral muscular dystrophy (FSHD): progresses slowly and generally doesn’t decrease life expectancy
• limb-girdle muscular dystrophy (LGMD): rate of progression and impact on life expectancy vary broadly between disease subtypes
• congenital muscular dystrophy (CMD): progression is slow in some subtypes, but others may shorten lifespan
• Emery-Dreifuss muscular dystrophy (EDMD): often causes heart problems, which may shorten lifespan
• distal muscular dystrophy: typically arises later in life and progresses slowly, generally not affecting life expectancy
• oculopharyngeal muscular dystrophy (OPMD): usually progresses slowly and doesn’t affect lifespan

Duchenne muscular dystrophy

Before ventilators and other respiratory support devices were available, the median DMD life expectancy was about 19 years. With at-home ventilators and improvements in treatment and care, more patients are now living into their 30s and even 40s. Cardiac and pulmonary complications are a leading cause of death.

Becker muscular dystrophy

Most people with BMD survive into adulthood, although their lifespan may be somewhat shortened. BMD life expectancy averages about 40 to 50 years. Heart problems are one of the most common causes of early death, but with proper care, some patients may have a near-normal lifespan.

Myotonic dystrophy

Myotonic dystrophy life expectancy depends on its subtype and age of onset. Type 1 myotonic dystrophy tends to progress more quickly and has a more severe impact on life expectancy than type 2. Type 1 severity and impact on lifespan are also generally greater if symptoms begin earlier in life. For individuals with congenital type 1 myotonic dystrophy, in whom the disease is present from birth, the average life expectancy is approximately 45 years. In contrast, for those with mild adult-onset type 1 and type 2, life expectancy may not be significantly affected.

Facioscapulohumeral muscular dystrophy

FSHD is a relatively slow-progressing form of MD. In most cases, FSHD life expectancy is largely unaffected and similar to that of the general population.

Limb-girdle muscular dystrophy

There are many subtypes of LGMD. Some forms, particularly those that start manifesting in childhood, can progress quickly and lead to disability. Heart and lung complications can occur in some subtypes, potentially limiting lifespan. In other forms, LGMD life expectancy may be normal.

Congenital muscular dystrophy

CMD life expectancy varies broadly across over 30 distinct subtypes. While CMD starts manifesting at or shortly after birth in all subtypes, progression rates vary, and many forms progress at a relatively slow pace. As with other types of MD, complications that impair heart and respiratory function can reduce lifespan.

Emery-Dreifuss muscular dystrophy

EDMD life expectancy may be shorter than average, because this form of MD often causes heart problems. With proper care, many people with EDMD survive to middle age or later.

Distal muscular dystrophy

Symptoms of distal MD typically begin in adulthood. Although the genetic cause and clinical presentation vary across subtypes, the disease generally progresses slowly. Distal MD life expectancy is generally normal.

Oculopharyngeal muscular dystrophy

OPMD usually arises later in life and progresses slowly. Life expectancy for people with OPMD is close to normal if the condition is properly managed.

How treatment can improve life expectancy

MD survival rates have improved, and more people with severe forms of the disease are now living into adulthood. Beginning treatment early can help slow muscle deterioration and prevent complications. Medications, assistive devices, and non-drug treatments can also improve quality of life for many individuals.

The effect of treatment is particularly pronounced for DMD, which historically has had poor outcomes. Life expectancy with treatment, including corticosteroids and targeted therapies, is now often much longer. The availability of at-home ventilation devices, including devices to support breathing at night, has also been a notable advancement in increasing life expectancy in DMD.