How Long Can You Live with Muscular Dystrophy?

Life expectancy for muscular dystrophy depends on the type. Some children with severe muscular dystrophy may die in infancy or childhood, while adults who have forms that progress slowly can live a normal lifespan.

Muscular dystrophy refers to a group of disorders that cause muscle weakness and usually run in families. Symptoms of most types of muscular dystrophy start in childhood, but others can begin in adulthood. Some types affect mostly boys while other types affect both boys and girls.

Types of muscular dystrophy include: 

• Duchenne and Becker muscular dystrophy
• Emery-Dreifuss muscular dystrophy
• Myotonic dystrophy
• Limb girdle muscular dystrophy
• Facioscapulohumeral muscular dystrophy (FSHD)
• Congenital muscular dystrophy

Symptoms of muscular dystrophy vary depending on the type.

Symptoms of Duchenne and Becker muscular dystrophy include: 

• Weakness that starts in the trunk and spreads to the arms and legs
• Legs usually weaken first, making it hard to run, jump, or climb stairs
• Heart and lung problems
• Abnormal curves in the spine (scoliosis)
• Mental problems in some children

Symptoms of Emery-Dreifuss muscular dystrophy include:

• Weakness starts in the arms and later affects the legs
• Sometimes weakness occurs in the face 
• Heart problems
• Limited movement at certain joints caused by tightening of the tissues around the joint (contracture)

Symptoms of myotonic dystrophy include:

• Weakness in face muscles, arms, and legs
• Muscle pain
• Problems affecting the heart, eyes, brain, and sexual organs
• Problems breathing and swallowing
• Stomach pain, diarrhea, and constipation
• Daytimes sleepiness 
• Nerve damage (neuropathy)

Symptoms of limb girdle muscular dystrophy include:

• Weakness in shoulders and hips
• Heart problems
• Joint contracture 

Symptoms of facioscapulohumeral muscular dystrophy (FSHD) include:

• Weakness face muscles to the point a person is unable to smile, whistle, or shut his or her eyes tight
• Weakness may affect the legs, shoulders, and upper arms
• Pain
• Hearing problems
• Heart problems
• Mental problems or seizures in some patients

Symptoms of congenital muscular dystrophy include:

• Weakness in many muscles (sometimes referred to as floppy baby”)
• Joint contracture 

Muscular dystrophy is caused by genetic mutations. Most of the time, a defective gene is passed on from one or both parents to a child. In some cases, a genetic mutation was not inherited from parents but occurs spontaneously, though this mutation may then be passed along to offspring of the patient. 

Muscular dystrophy is diagnosed with a physical exam and: 

• Genetic testing
• Blood tests to check for proteins that indicate muscle damage
• Muscle biopsy
• Electromyography (EMG) 
• Electrocardiogram (ECG) 
• Magnetic resonance imaging (MRI) of the heart
• Echocardiogram (“echo”)

There is no cure for muscular dystrophy. Treatments for muscular dystrophy include: 

• Medications
  • Glucocorticoids, such as prednisone to reduce inflammation
  • Anticonvulsants to help control seizures and some muscle spasms
  • Eteplirsen for Duchenne muscular dystrophy
  • Immunosuppressants may help delay damage to dying muscle cells
  • Antibiotics to treat respiratory infections
• Physical therapy
  • Physical activity 
  • Stretching exercises 
• Respiratory therapy
  • Breathing exercises
  • Assisted ventilation
• Speech therapy
  • For patients with weakness of facial and throat muscles 
  • Learning to slow the pace of speech and use special communication equipment
• Occupational therapy 
  • Helps with movements and abilities for everyday tasks 
  • Teaches use of assistive devices such as wheelchairs and utensils
• Assistive devices
  • Braces
  • Wheelchairs
  • Other devices 
• Corrective surgery
  • To treat conditions that result from muscular dystrophy
    • Pacemaker to treat heart problems 
    • Cataract surgery

Complications of muscular dystrophy include: 

• Joint contractures 
• Dependence on a wheelchair 
• Muscle weakness 
• Osteoporosis and fractures  
• Scoliosis 
• Breathing problems
• Heart problems
• Problems swallowing

Life expectancy for muscular dystrophy depends on the type. Some children with severe muscular dystrophy may die in infancy or childhood, while adults who have forms that progress slowly can live a normal lifespan. 

• Duchenne and Becker muscular dystrophy
  • People with Duchenne and Becker muscular dystrophy may survive into their 40s or beyond
• Emery-Dreifuss muscular dystrophy
  • Depending on the severity of the disease, if patients treat symptoms and heart problems, it may not affect lifespan
• Myotonic dystrophy
  • Limited information is available on the life expectancy of patients this form of muscular dystrophy but due to its slow progression, it may not affect life expectancy 
• Limb girdle muscular dystrophy
  • The progression of this type of muscular dystrophy varies
  • In some patients, the disease progresses quickly, leading to disability and affecting life expectancy
  • For others, the disease progresses slowly and life expectancy may not be affected
• Facioscapulohumeral muscular dystrophy (FSHD)
  • This is a slow-progressing type of muscular dystrophy and does not affect life expectancy in most patients 
• Congenital muscular dystrophy
  • The life expectancy of patients with congenital muscular dystrophy varies depending on the type
  • Some types are progress slowly while others may shorten life span