Life expectancy in Duchenne muscular dystrophy
People with Duchenne muscular dystrophy have a shorter-than-average life expectancy due to changes in muscles that affect breathing, heart activity, and other functions. However, treatment advances have improved life expectancy.
Many people with Duchenne muscular dystrophy (DMD) now live into their 20s or 30s with treatment. Some even survive into their 40s or longer.
While DMD has no cure, treatment is important for preventing, delaying, and managing possible complications that can reduce the length and quality of a person’s life with DMD.
The specific type of gene change someone has may affect their treatment options and outlook. Any co-occurring medical conditions they have or complications they develop can also affect their outlook.
Read on to learn more about life expectancy in DMD and the factors that can affect it.
According to a 2021 research review, recent improvements in DMD treatment have increased the median life expectancy at birth to roughly 28 years for people born after 1990.
Most people with DMD live to be at least 20 years old, and some survive into their 30s or 40s. It is rare for those with the disease to live into their 50s, although this might change if new treatments continue to increase life expectancy.
People with DMD usually develop noticeable muscle weakness by 2 or 3 years of age. The muscle weakness becomes more severe over time, leading to changes in physical abilities and possible complications such as breathing difficulties and heart disease.
Treatment is necessary to manage symptoms and complications across the life span.
Effective treatment helps improve survival and quality of life in DMD.
Treatment plans will vary depending on a person’s specific symptoms, complications, and goals.
A person’s age and specific gene change may also affect their treatment options.
Corticosteroids are medications that help reduce muscle inflammation in DMD and, as a result, may slow the progression of the disease.
A 2022 research review found that corticosteroid use improves survival and may delay certain complications, such as:
Targeted disease-modifying therapies are new treatments for DMD that may slow the progression of the disease and, therefore, improve survival and quality of life.
However, more long-term research is necessary to learn how targeted therapies affect life expectancy.
Some targeted therapies are available only for people who have specific gene changes. Targeted therapies are not yet available for every type of gene change that someone with DMD may have, but new techniques may become available in the future.
Ventilatory support is a type of supportive therapy to manage breathing difficulties.
A 2020 review suggests a link between ventilatory support and greater survival in people with DMD.
The median life expectancy without ventilatory support ranged from about 14 to 27 years across the reviewed studies, with a pooled median survival of about 19 years.
The median life expectancy with ventilatory support ranged from about 21 to 40 years across the studies, with a pooled median survival of about 30 years.
A doctor can help someone learn about types of ventilatory support and other treatments for breathing difficulties.
Cardiac care may involve medications such as beta-blockers and angiotensin converting enzyme (ACE) inhibitors, which affect blood vessels and heart function.
The authors of a
The review also linked the use of a left ventricular assist device (LVAD) to longer survival. A surgeon may implant this device into a person’s heart to help it pump blood.
Regular checkups with a cardiologist (a heart specialist) are important for identifying and managing changes in the heart.
Various changes on the DMD gene can cause DMD. The specific change that someone has may affect their treatment options and the progression of the disease, including the risk of life threatening heart complications.
A doctor may order gene analysis to try to identify the specific gene change someone has. A doctor can also help a person understand how a specific gene change may affect their treatment options or outlook.
People with DMD may develop complications or other conditions that affect their outlook.
These complications and other conditions may negatively affect quality of life and survival. Treatment is important to improve outcomes.
For people with DMD born before 1970, the average life expectancy at birth was 14.4 years.
Now, the median life expectancy at birth for people with DMD is close to 30 years.
Life expectancy may continue to improve as new treatments become available and scientists find the best ways to use them.
A person can talk with their doctor to learn about the latest and most effective treatment options and how treatment may affect outcomes.
Many people with Duchenne muscular dystrophy (DMD) survive into their 20s or 30s, and some live into their 40s.
Various gene changes can cause DMD. The specific gene change someone has may affect their treatment options and outlook.
Advances in treatment have helped improve survival and quality of life over time.
Corticosteroids and targeted disease-modifying therapies may help slow the progression of DMD and delay or prevent possible complications. Breathing support, cardiac care, and other supportive therapies may help delay complications or limit their effects on quality of life and survival.
Doctors can help people with DMD and their caregivers learn about the latest and most effective treatment options. New treatments may also become available in the future.