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Life expectancy for people living with Duchenne muscular dystrophy (DMD) has significantly increased in recent years as more treatments emerge. New options such as gene therapies, exon-skipping therapies, and nonsteroidal medications help address the causes of this muscle-weakening disease.
In this article, we’ll discuss Duchenne muscular dystrophy life expectancy and how different therapies are improving prognosis (outlook). We’ll also cover common complications that affect the outlook of those living with DMD.
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DMD is a rare neuromuscular disorder that’s usually diagnosed in early childhood. This condition causes muscle weakness and degeneration that gets worse over time. DMD is caused by genetic changes in the dystrophin gene, which gives instructions to make dystrophin — a protein that holds muscle cells together and helps them function properly. People with DMD don’t make enough dystrophin, which leads to muscle symptoms.
As the most common type of muscular dystrophy, DMD affects 4.8 per 100,000 people globally and accounts for about half of all cases of muscular dystrophy. A milder form of muscular dystrophy called Becker muscular dystrophy, which affects 1.6 in 100,000 people globally, tends to develop in teenagers and young adults.
Most symptoms of DMD appear in early childhood. Over time, people with DMD can develop other complications that affect their disease outlook, including lung and heart problems. Common signs and symptoms of DMD include:
To better understand the disease outlook with DMD, it’s important to learn how researchers talk about survival and life expectancy. Many DMD studies discuss survival rates in terms of median overall survival (OS). Here, we use this term to mean how long 50 percent of people with DMD remain alive after a period of time.
As doctors and researchers have learned more about DMD and how to treat it, survival rates have significantly improved. Researchers from Sweden and Great Britain performed a meta-analysis of 14 studies from around the world looking at people with DMD. This study, published in 2021, found that the median OS was 22 years. This means that half of the people with DMD lived to age 22 or beyond.
The median OS could be divided further into different age groups:
A small study from Sweden, published in 2024, followed 129 people with DMD. The results showed that the mean (average) lifespan among people with Duchenne muscular dystrophy was 24.3 years. Researchers focused on respiratory complications and their impact on survival.
The Muscular Dystrophy Association notes that with improved cardiac and respiratory care, people with DMD are more commonly living into their 30s.
There’s no cure for DMD, but standard treatments and newer options are helping people with the condition live longer and enjoy a better quality of life. DMD therapies focus on managing symptoms and slowing disease progression.
Gene therapies for DMD aim to help the body produce a shortened form of dystrophin. Because DMD is caused by a lack of dystrophin, gene therapy may help slow disease progression by providing cells with instructions to make a functional form of the protein.
In 2023, the U.S. Food and Drug Administration (FDA) approved the gene therapy delandistrogene moxeparvovec-rokl (Elevidys) for a limited group of people with DMD. The medication is given by IV infusion (into a vein) and is approved only for people ages 4 and older who are ambulatory, meaning they can still walk. This gene therapy carries a boxed warning for serious liver injury, which can be life-threatening. Doctors check liver tests before treatment and continue monitoring them for a period of time after the infusion.
Because gene therapy is a newer treatment for DMD, it’s unclear what its effect will be on Duchenne muscular dystrophy prognosis.
One of the best ways to slow DMD progression is to start treatment with corticosteroids (steroids) shortly after receiving a diagnosis. Corticosteroid medications are synthetic (laboratory-made) hormones that help control inflammation. In people with DMD, these drugs may help the body repair damaged or weakened muscle cells.
Studies show that corticosteroids help strengthen muscles in people with DMD. Long-term corticosteroid treatment can help reduce a person’s risk of losing mobility and their risk of death by more than 50 percent.
A study of 86 people with DMD found that survival rates were significantly higher for those treated with corticosteroids compared with those who didn’t get these medications. After 15 years, 78.6 percent of people in the corticosteroid group were alive, compared with 27.9 percent of those who didn’t receive corticosteroid treatment.
Another study followed 440 people with DMD for up to 10 years. The researchers found that those who used a type of steroid medication called glucocorticoids for at least a year had slower disease progression than those who took this treatment for a month or less or didn’t take it at all. The lead researcher also noted that participants who took the steroids had a 50 percent lower risk of death than those who didn’t take them.
Some corticosteroids used for treating DMD include deflazacort (Emflaza, Jaythari, Pyquvi), prednisone, and vamorolone (Agamree). Corticosteroids work well to treat DMD, but they’re linked to some side effects. Overall, the benefits outweigh the risks, but side effects can include:
In 2024, the FDA approved givinostat (Duvyzat) for people ages 6 and older with DMD, regardless of their specific gene change. This medication helps support muscle health and may slow disease progression. Researchers don’t yet know if this drug affects DMD life expectancy.
Some recently developed DMD therapies target different mutations in the dystrophin gene. Many people with DMD are missing a specific piece of DNA called an exon, which means their cells lack the full instructions needed to make dystrophin protein. Exon-skipping therapies help correct this problem so that muscle cells can make more dystrophin. The FDA has approved several exon-skipping therapies, including:
One study found that treatment with eteplirsen improved median OS rates by 5.4 years. Researchers found that 50 percent of people who received eteplirsen lived for nearly 33 years, compared with 27.4 years for those not treated with this therapy.
It’s important to note that many of these treatments are new and haven’t been studied long term, so their effects on life expectancy aren’t yet known.
Dystrophin helps the lungs and heart work properly — without it, the risk of serious health complications increases. People with DMD often have weakened lung and heart muscles, which makes it hard to breathe. The most common complications and causes of death in people with DMD are:
Treatments are available to help prevent these complications. Your child’s or loved one’s healthcare provider will prescribe medications or respiratory care as needed. Heart medicines like beta-blockers and ACE inhibitors can take stress off the heart and help it pump better. Doctors may also add mineralocorticoid receptor antagonists to further protect the heart. Studies show that, when prescribed early, these medications can help people with DMD live longer.
Medical devices can also help some people with DMD breathe better during the day and at night. Different types of ventilation can help move air into the lungs, while other devices help with coughing and clearing mucus to keep the lungs clear. Studies show that using ventilation during sleep has improved muscular dystrophy life expectancy in adults and children.
Finally, it’s essential to have a team approach to provide the best care, including a physiotherapist to help with movement and exercises and a neurorehabilitation specialist to support long-term function and quality of life.
On myMDteam, people share their experiences with muscular dystrophy, get advice, and find support from others who understand.
Have you talked with a doctor about life expectancy with muscular dystrophy? What questions do you have about muscular dystrophy survival rates? Let others know in the comments below.
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