If your child has been diagnosed with muscular dystrophy, it’s natural to wonder what their future holds. Muscular dystrophy is a neuromuscular disease that causes muscles to weaken over time. Each type is different and comes with a unique set of symptoms and challenges. Some forms affect muscles more slowly and have little impact on lifespan. Others can lead to more progressive muscle weakness that can affect the heart and lungs in different ways.

This article will discuss life expectancy for some of the main forms of muscular dystrophy. It will also explain how new treatments are helping to improve both lifespan and quality of life for those living with the condition.

Duchenne Muscular Dystrophy

Duchenne muscular dystrophy (DMD) is the most common and severe form of muscular dystrophy. According to WoltersKluwerUpToDate, an evidence-based clinical reference, it’s usually diagnosed in boys in early childhood, usually between ages 2 and 5. However, milder symptoms can appear in girls, too. In DMD, the body doesn’t make enough dystrophin, a protein needed for muscle strength and stability. Over time, the muscles — including the heart and lungs — become weaker. Before modern treatments were available, people with DMD often had a life expectancy in their teens to early 20s. But today, this has improved, and people with DMD may expect to live into their 30s.

Researchers have made a lot of progress in recent years. New treatment options are helping people with DMD manage symptoms and live longer. These include gene therapy, corticosteroids (steroids), heart medications, and respiratory support.

Gene Therapy and Exon-Skipping Therapy

Gene therapy is a newer type of treatment that aims to replace or repair the faulty gene causing DMD. In 2023, the United States Food and Drug Administration (FDA) approved a gene therapy called delandistrogene moxeparvovec (Elevidys) for certain people with DMD. This therapy delivers a modified gene that helps the body produce dystrophin. This could reduce muscle breakdown. It’s still too early to know how much this treatment will improve life expectancy, but it’s a step forward.

Exon-skipping therapy can correct specific gene mutations (changes) by “skipping” over the faulty parts of the dystrophin gene. Examples of exon-skipping drugs include:

• Casimersen (Amondys 45)
• Eteplirsen (Exondys 51)
• Golodirsen (Vyondys 53)
• Viltolarsen (Viltepso)

These medications allow the body to make a shorter but functional version of the protein. Research shows that exon-skipping therapy may help people with DMD maintain muscle strength longer. This could improve both mobility and longevity.

Glucocorticoids

Glucocorticoids, such as prednisone and deflazacort, help slow muscle damage. They’re often used in DMD to give children a longer period of mobility and better muscle function. Studies from The Lancet show that long-term steroid use can improve life expectancy significantly. They can also slow down the progression of scoliosis — a condition where the spine curves sideways — which is common for males with DMD.

Heart and Lung Support

Because DMD affects the heart and lungs, early monitoring and treatment with heart medications is essential. This often includes angiotensin-converting enzyme (ACE) inhibitors and angiotensin receptor blockers, both of which relax blood vessels and lower blood pressure. This makes it easier for the heart to pump blood. Beta-blockers are commonly used as well, helping to lower blood pressure and reduce stress on the heart muscle.

Respiratory support helps with breathing as the disease progresses. For example, noninvasive ventilation devices — like a face mask or nasal mask — can reduce complications and extend lifespan.

Becker Muscular Dystrophy

Becker muscular dystrophy (BMD) is similar to DMD but usually less severe. It affects the same gene as DMD, but people with BMD can still make some dystrophin. This means their muscles don’t weaken as quickly. Symptoms often start later, usually in late childhood or adolescence. People with BMD usually remain mobile longer and have a slower progression of muscle weakness.

Life expectancy for people with BMD varies widely, depending on how much the disease affects their heart and lung function. The average lifespan of someone with BMD is about 40 to 50 years, but many live into their 50s, 60s, and even 70s.

The risk of cardiomyopathy (a disease of the heart muscle) and heart failure is high for people with BMD. However, medications like ACE inhibitors and beta-blockers have improved the outlook. Regular heart monitoring and early use of medications are key in supporting long-term health.

Myotonic Muscular Dystrophy

Myotonic dystrophy, sometimes called DM, is the most common form of adult-onset muscular dystrophy. It has two main types, DM1 and DM2, and can affect multiple body systems. Symptoms vary widely and can include difficulty relaxing muscles, weakness, heart problems, and breathing difficulties. DM1 usually develops between the ages of 20 and 40, while DM2 often appears later in adulthood or middle age. DM can also affect the spine, leading to scoliosis, especially in children with early-onset DM.

Treatments for Improving Life Expectancy in DM

Heart complications are common in DM. Pacemakers and heart medications can help catch and prevent life-threatening complications. Breathing issues are also a concern in DM, especially during sleep. Noninvasive ventilation can help with breathing problems and improve life expectancy.

Limb-Girdle Muscular Dystrophy

Limb-girdle muscular dystrophy (LGMD) includes a variety of subtypes. Depending on the type, symptoms can range from mild to severe. LGMD affects the muscles around the hips and shoulders. This muscle weakness leads to difficulty with movements like walking and lifting. It can also affect the muscles of the lower legs, making it hard for people to stand up or climb stairs. Some subtypes start in childhood, while others begin later in life. Lifespan depends on the subtype, but many people, especially those whose heart and lungs are not affected, can live a normal life.

Emery-Dreifuss Muscular Dystrophy

Emery-Dreifus muscular dystrophy (EDMD) often starts in childhood or adolescence. It affects the shoulders, upper arms, and calves. People with EDMD often experience joint and muscle contractures, which cause stiffness in the elbows, knees, and ankles. EDMD also commonly affects the heart, making heart complications a major concern.

People with EDMD often develop arrhythmias (irregular heartbeats) that can lead to sudden cardiac arrest (heart failure). Pacemakers and defibrillators can be used to help regulate heart rhythms, which can prevent life-threatening events. With proper care, people with EDMD can live into middle age or longer.

The Importance of Early Diagnosis and Specialized Care

Early diagnosis is important in all types of muscular dystrophy. It allows doctors to start treatments that can slow disease progression and improve quality of life. Advances in genetic testing mean that many types of muscular dystrophy can now be diagnosed more accurately and sooner, even in infancy in some cases. By starting treatments early — such as corticosteroids, heart medications, physical therapy, and respiratory support — people with muscular dystrophy can stay healthier and live longer.

Supportive Therapies That Help Improve Quality of Life

For people with all forms of muscular dystrophy, supportive therapies are key to maintaining a better quality of life and potentially living longer. Physical and occupational therapy can help maintain muscle function, reduce contractures, and support independence. Assistive devices such as braces, wheelchairs, and mobility aids can also allow people with muscular dystrophy to remain more mobile and keep their independence for longer.

Each type of muscular dystrophy has a different outlook, but advances in genetic research and supportive therapies bring new hope. Early diagnosis and proactive care are helping people with muscular dystrophy live longer, healthier lives. By working closely with your health care team, caregivers can ensure their loved ones receive the best possible care to maximize quality of life and extend life expectancy.

Talk With Others Who Understand

On myMDteam, the site for people with muscular dystrophy and their loved ones, people come together to gain a new understanding of muscular dystrophy and share their stories with others who understand life with the condition.

What treatments or supportive therapies have you tried for muscular dystrophy? Share your experience in the comments below, or start a conversation on your Activities page.