If you’re caring for a child who has been diagnosed with Duchenne muscular dystrophy (DMD), you may know that this genetic disease causes muscle degeneration over time. In people with DMD, progressive muscle weakness begins in the lower body and affects walking, balance, and coordination. Difficulty walking, slow walking, or abnormal walking can be some of the first signs and symptoms of DMD.

As a caregiver, you may be wondering what Duchenne gait looks like, how to talk to your care team about walking with DMD, and what might help your child stay mobile for longer. Read on to learn more about each of those topics.

How DMD Affects Mobility

DMD is caused by a recessive gene mutation on the X chromosome that makes it impossible for the body to produce a protein called dystrophin, one of the largest proteins in the body. Our muscles need dystrophin to work normally. Without dystrophin, muscles shrink and weaken over time, and they eventually stop working.

The loss of muscle strength often begins in the legs and hips but can also affect the arms, neck, and shoulders. Symptoms usually appear when a child is two to three years old. Early signs include difficulty running, jumping, or climbing stairs. Your child may also fall more often.

As DMD progresses, mobility problems worsen. Muscles weaken over time, and eventually, the child may lose the ability to walk and will need a wheelchair.

Walking-Related Symptoms of DMD

There are a few different walking-related symptoms that children with DMD may experience due to muscle weakness.

Duchenne Gait

One of the first signs of DMD is a unique walking pattern known as “Duchenne gait.” Children with DMD often have a distinctive gait that involves toe walking or waddling. This symptom usually first appears between the ages of 3 and 5 years.

You might notice your child walking on their tiptoes. The easiest way to identify this is by seeing that their heel doesn’t touch the ground first with each step. Toe-walking is thought to help maintain balance for children with DMD, who have muscle weakness in their legs.

Core muscle weakness can also cause children with DMD to walk with an uneven step pattern, where one side of their body moves differently from the other.

Difficulty Standing Up

Difficulty standing up from the floor is another key sign of DMD. Because of leg weakness, children with DMD often have a distinctive way of standing up, called Gower’s sign. With Gower’s sign, children first get on their hands and knees, then “walk” their hands up their legs and push off their thighs to reach a standing position. This typically starts between ages 3 and 5.

Late Walking

Research shows that children with DMD are more likely to be delayed in learning to walk. While most children start walking independently around 12 months old, many children with DMD begin walking at 16 months or later.

Loss of Ability To Walk

Because Duchenne muscular dystrophy is a progressive disease, difficulty walking typically worsens as a child gets older. Most children with the disease lose their ability to walk and begin using a wheelchair by age 10 or 12.

Helpful Therapies and Devices

Although there is no cure for DMD, there are many treatments and therapies that can help your child stay mobile longer and live more comfortably. Individualized care is very important for children with DMD. Your child’s medical team can help you understand treatment options and help you manage symptoms.

Your child’s care team may include a neurologist, pediatric primary care provider, rehabilitation specialist, cardiologist, pulmonologist, and physical and occupational therapists. Together, they will create a care plan that meets your child’s specific needs. Thanks to advances in medical care, children with DMD can often stay mobile and independent longer. Many individuals with DMD live into adulthood, attend college, and pursue careers.

Early Intervention

If you suspect your child may have DMD, it’s important to seek professional help as soon as possible. Doctors may use tools like blood tests and muscle biopsies to diagnose the disease and recommend a care plan. Early intervention is key, because starting treatment early can help slow the progression of the disease. Most drug treatments aim to prevent muscle tissue loss, but they cannot help it regrow. So, starting treatment as soon as possible is essential.

Drug Therapies

Several drugs have shown promise in slowing the progression of DMD and helping some children remain mobile longer. These include certain steroids and drugs that promote the production of dystrophin proteins, which help strengthen muscles.

Some corticosteroid drug therapies also help delay scoliosis, a symptom of DMD that causes a curvature of the spine that can make walking more difficult. Many doctors believe these drugs are most helpful when DMD is diagnosed early. Some studies have shown that glucocorticoid steroid medications can help delay the loss of the ability to walk by up to two years.

Physical Therapy

Occupational and physical therapy can help slow muscle weakening in children with DMD and help your child maintain independence with daily tasks. Exercises and stretches recommended by your therapists may help your child stay mobile longer. Physical therapy can also help avoid contractures, a symptom of DMD that occurs when a muscle tightens and becomes permanently immobile.

Orthotic Devices

Orthotic devices, also called braces, can help support weak muscles and stretch muscles to prevent contractures. Ankle-foot orthoses are a type of brace worn at nighttime to pull on the Achilles tendon and keep the calf muscle stretched. These devices can help prevent cramping, relieve discomfort, and extend your child’s ability to walk.

Regular Exercise

While muscle weakness and fatigue can make exercise difficult, it’s important for people with DMD to stay active. Regular exercise helps prevent muscles from weakening due to inactivity. Your care team may suggest light activities like swimming and cycling. Some studies show that increased daily physical activity and walking can help prolong the ability to walk by a few years.

Assistive Mobility Devices

As DMD progresses, most children will eventually need help walking and moving. Assistive devices like canes, walkers, wheelchairs, and motorized scooters can help children with DMD move around safely.

While some treatments can help delay the loss of mobility, people with DMD will eventually lose their ability to walk and need a wheelchair or scooter. For many people with DMD, the transition to a wheelchair or scooter can be a relief. It helps improve independence and reduces the fear of falling.

Advocate for Accessibility

Your child deserves the chance to continue participating in spaces and activities they enjoy. As walking becomes more difficult for your child, you may need to make changes to your home and advocate for accessibility at school or in public places. In your home, you might consider widening doorways to accommodate a wheelchair and adding ramps or stair lifts to make sure your home is accessible.

Do Walking Issues Impact Quality of Life?

The symptoms of DMD, including mobility issues, can often impact a person’s quality of life. Despite the challenges, people with DMD tend to have a better quality of life when they have strong social support, receive quality care, and learn to accept and adapt to their condition. While caregivers often worry that mobility challenges will severely affect their child’s quality of life, data shows that disability does not significantly impact life satisfaction for young people with DMD.

You can help your child live a healthy and fulfilling life, both before and after they lose the ability to walk, by providing the support and care they need. Although mobility issues bring many challenges for both the person with DMD and their family, leaning on caregiver resources, your care team, and your friends and family can help you cope with these challenges.

Find Your Team

At myMDteam, the site for people with muscular dystrophy and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with muscular dystrophy.

How have you managed changes in your child’s walking due to DMD? Share your experiences in the comments below or on your Activities page.