Duchenne muscular dystrophy (DMD) is a genetic condition that causes muscles to get weaker over time. When a child is born with DMD, they may not have obvious signs or symptoms at first. Symptoms may show up later and can become more noticeable. Because DMD affects the muscles, it can change how someone moves, plays, and goes about daily life.

🗳️ Have you noticed signs of DMD progression in your child?

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Yes, mostly breathing or heart changes

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The 5 Stages of Duchenne Muscular Dystrophy

Researchers have identified stages that help describe what DMD may look like at different points in life. Although DMD muscular dystrophy progression can look different from person to person, people with DMD often move through five stages:

• Diagnosis — During infancy and early childhood years, a child with DMD may experience initial DMD symptoms, although many children don’t show any signs.
• Early ambulatory — Children are usually diagnosed with DMD between the ages of 3 and 6, although they may not show many symptoms at this time.
• Late ambulatory — During the late childhood and teen years, a child with DMD will often start to have more problems with muscle weakness and tiredness.
• Early nonambulatory — Many people with DMD become nonambulatory (unable to walk) by around age 12, and symptoms worsen in the teen and young adult years.
• Late nonambulatory — Adults with DMD need continued care to monitor for ongoing health issues.

Work with your or your loved one’s healthcare provider to learn more about what to expect at each stage. As DMD progresses, different symptoms may develop, and the medical care plan may change. There is no exact DMD timeline.

What Does Duchenne Muscular Dystrophy Progression Look Like?

Signs of progression may look different compared to the initial symptoms that lead to a diagnosis of DMD. If you have a child with DMD and they start having new symptoms, talk to their pediatric care team, as this may be a sign that the condition is changing.

1. Worsened Muscle Weakness

A decrease in muscle strength is the main symptom of DMD, and it happens in nearly everyone with this neuromuscular disease. Weakness can show up early in infants, but it often gets worse as the condition affects more skeletal muscles — the muscles attached to bones that help you move.

For those with DMD, muscle weakness tends to happen in a certain order, first affecting muscle cells in the hips, pelvis, and shoulders. Later on, weakness affects muscle fibers in the abdomen (stomach area), back, lower arms, and thighs.

At first, DMD may lead to frequent falls, an unusual gait, such as waddling or walking on the toes, or difficulty standing from a squatting position. Children may walk their hands up their legs to stand upright, a maneuver called Gowers’ sign.

More than half of teens living with DMD experience persistent or ongoing pain in their muscles.

During the preteen, teen, or young adult years, progressive muscle weakness may become severe enough that moving around becomes difficult, and the person loses their ability to climb stairs. A scooter or leg braces can often help people with DMD get around more easily. Wheelchair use becomes common by the time children with DMD reach 12 years of age.

2. Muscle Pain

More than half of teens living with DMD experience persistent or ongoing pain in their muscles. These aches can make it harder to move around and be social. Pain can also take away from a child’s ability to be independent, affect their well-being, and negatively affect their mood.

Muscle pain is more likely to be a problem as DMD progresses. As a child moves into the late nonambulatory stage, they tend to have pain more often in other parts of their body.

3. Fatigue

Fatigue is different from tiredness. It’s exhaustion and lack of energy that continue even after rest. It may take some time for this DMD symptom to appear. Some children with the condition can move around and play in the same way as their friends without DMD. However, fatigue can show up as they get older.

Feelings of tiredness are a common part of DMD. One study found that about 4 out of 10 participants with DMD experienced fatigue. This symptom can affect your loved one’s quality of life, making them feel worse.

Fatigue may happen because of ongoing muscle damage. Extreme tiredness may also be linked to mental health issues like depression or sleep problems, which are common in people with DMD.

4. Spinal Abnormalities

Young children with DMD may walk with their chests pushed forward. As DMD gets worse, back problems can become more serious. Some children may develop scoliosis, which is a sideways curve of the spine, or lordosis (also called swayback), which is when the lower spine curves too far inward.

5. Broken Bones

DMD can weaken the bones. Children with the condition are more likely to experience broken bones. By age 6, about 4 percent of children with DMD have broken a bone, and this number jumps to 60 percent by the time children reach the age of 15.

Broken bones can happen in part because long-term steroid use and low vitamin D levels can weaken bones. Vitamin D helps the body absorb calcium, a mineral that helps keep bones strong.

Children with DMD are more likely to experience broken bones.

Fractures often happen in the back and hips. Doctors may recommend regular spine X-rays to check for fractures in people with DMD.

6. Heart Problems

DMD commonly affects the heart. Many people with the condition start experiencing cardiomyopathy during their late teens. By the age of 18, nearly everyone with DMD has heart involvement, such as cardiomyopathy.

Cardiomyopathy is a weakened heart muscle, which can prevent the organ from pumping enough blood around the body. People with DMD may also have abnormal heart rhythms called arrhythmias, which may cause the heart to beat too quickly, too slowly, or irregularly.

By the age of 18, nearly everyone with DMD has some type of heart involvement, such as cardiomyopathy.

Doctors recommend tests to check heart function when a child is first diagnosed with DMD. Children with DMD should have follow-up tests every year, or more often if they have heart symptoms. Regular heart testing can help your healthcare team choose the right treatment as DMD and related heart problems change.

7. Breathing Difficulties

Many people with DMD have breathing problems as well as symptoms of too little oxygen, such as tiredness, headaches, and nightmares.

Respiratory symptoms develop when muscles in the chest become too weak to work properly. This can prevent a child from being able to effectively cough out germs or mucus. Mucus can block the airways, making it hard to take a deep breath. Parts of a child’s lungs or airways can also collapse. These issues can make it easier to develop respiratory infections like pneumonia.

Breathing problems often happen at night, sometimes early in the course of DMD. As the disease progresses, it can lead to shallow breathing during the day, too. Respiratory failure (when you can’t breathe in enough oxygen) may make it harder to think clearly and stay awake.

Some doctors recommend that children with DMD get regular testing to look for respiratory issues starting at age 5 or 6. When your doctor regularly checks your child’s breathing, they can spot new breathing problems early and treat them as DMD changes.

8. Digestive Problems

Weakened muscles in the abdomen and gastrointestinal system may affect swallowing and digestion. Normally, muscles in and near the stomach and intestines help push food through the digestive tract. With DMD, however, the muscles don’t work well enough to keep food moving at a normal rate. This condition is called dysmotility, and it may lead to symptoms like constipation or diarrhea.

9. Urinary Symptoms

In a study published in PLOS One, researchers estimated that urinary incontinence affects about 15 percent to 37 percent of men with DMD or Becker muscular dystrophy, another form of muscular dystrophy. Urinary incontinence means urine leaks when you don’t expect it. This can affect emotional health, make travel harder, and limit social time.

10. Symptoms Related to Thinking, Learning, and Behavior

As children with DMD get older, they may need extra help in school or at work. They may develop problems related to cognition (brain function), such as struggling to concentrate or multitask. DMD and its treatments can also make it hard to control emotions, and people with this rare disease may experience emotional outbursts.

Treating Duchenne Muscular Dystrophy Progression

Tell your child’s healthcare provider if you notice any new symptoms. They may be a sign that DMD is changing. Your provider can help find treatments that may ease symptoms and support you or your loved one. Keeping up with regular checkups can also help catch problems early. Write down any new symptoms you notice between visits and share them with your child’s provider.

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On myMDteam, people share their experiences with muscular dystrophy, get advice, and find support from others who understand.

Have you or a loved one been diagnosed with DMD? What signs and symptoms do you have? Let others know in the comments below.