Duchenne muscular dystrophy (DMD) is a rare and serious congenital (existing from birth) neuromuscular disorder that makes muscles weak over time. It’s important to have a team of health care providers who can help manage its different aspects, including trouble walking, which often starts between ages 3 and 5, and heart and breathing issues. Some children with DMD may also experience anxiety, depression, and learning disabilities.

DMD occurs because of a mutation (change) in the dystrophin gene, which helps make a muscle-strengthening protein called dystrophin. This condition mostly affects boys — girls are rarely diagnosed, according to the Muscular Dystrophy Association.

DMD is progressive, meaning it gets worse over time, so your child may require care from different types of specialists at different stages. This article describes the types of providers who can help your child stay as strong and healthy as possible, but always ask your child’s medical providers for guidance as you build their health care team.

Primary Care Provider

A primary care provider (PCP) is the first person many people visit for regular checkups and nonemergency care. For children, this is usually a pediatrician or pediatric nurse practitioner. These providers:

• Perform annual checkups
• Diagnose and treat illnesses and infections
• Give vaccines
• Help with everyday health needs

For children with DMD and other forms of muscular dystrophy (MD), a PCP plays an important role with referrals to specialists and helps coordinate care.

Neuromuscular Specialist

A neuromuscular specialist is a neurologist who focuses on nerve and muscle diseases such as DMD. They have special training to diagnose and manage muscular dystrophy and related disorders. These neurology specialists often confirm the DMD diagnosis. If your child has DMD, they’ll likely see their neuromuscular specialist at least once a year to check strength, function, flexibility, and disease progression.

Cardiologist

A cardiologist is a doctor who diagnoses and treats heart problems. Since DMD raises the risk of cardiomyopathy (heart muscle disease) and arrhythmia (irregular heartbeats), everyone with DMD should see a cardiologist at least once a year. A cardiologist will check how well your child’s heart is working, recommend medicines if needed, and make sure their heart is strong enough for surgery for scoliosis (curved spine) or other orthopedic (bone-related) issues.

Pulmonologist

A pulmonologist is a doctor who focuses on lung health. DMD weakens the muscles that help with breathing and coughing, which can lead to illnesses, infections, and trouble breathing. Initially, your child may see a pulmonology specialist once or twice a year. As DMD progresses, more frequent visits may be needed.

Endocrinologist

An endocrinologist is a doctor who specializes in diagnosing and managing hormone and growth issues. Steroids are a common treatment option for DMD, but these medications can lead to problems with hormones and bone health if taken daily. Over time, steroids change how the body makes and uses natural hormones, which can affect growth, puberty, and bones. An endocrinologist will track your child’s growth, check for any hormone problems, and suggest ways to keep bones strong and healthy.

Dietitian

A dietitian helps ensure that your child eats a well-balanced diet, stays hydrated, and gets the necessary vitamins and nutrients. They can also evaluate dysphagia (swallowing problems), which can happen because DMD weakens throat muscles. A dietitian will:

• Suggest foods that are easier to eat
• Track your child’s weight
• Watch for changes caused by steroid use, such as weight gain or bone issues

Your child may see a registered dietitian or registered dietitian nutritionist regularly to support their overall health.

Physical Therapist

A physical therapist works to keep muscles flexible and strong so your child can stay active and independent for as long as possible. Regular physical therapy and stretching can also help minimize contractures (tightening). This common DMD symptom happens when joints get stuck in place, making it hard to move and causing discomfort and pain. A physical therapist can help your child find new ways to stay mobile and active as their disease progresses.

Occupational Therapist

An occupational therapist can help your child stay as independent and active as possible. Although physical therapy focuses on motor skills and mobility, occupational therapy can improve your child’s quality of life by helping them continue with daily activities, like schoolwork, hobbies, and time with friends. An occupational therapist can also recommend assistive devices such as braces and teach you and your child how to use them effectively.

Orthopedist

An orthopedist, or orthopedic surgeon, specializes in caring for bones, joints, ligaments, and tendons. They can help manage issues such as scoliosis and contractures of the ankles, knees, hips, and elbows. Not everyone with DMD will need to see this type of specialist, but regular checkups can catch problems like early spine damage. Orthopedists often work closely with physical therapists and other specialists to help maintain your child’s mobility.

Mental Health Professional

A mental health professional — such as a psychologist, psychiatrist, therapist, or counselor — can help your child handle psychological and social issues that affect some people with DMD. These challenges include:

• Depression
• Anxiety and stress
• Learning disabilities
• Developmental delays
• Behavioral problems

Some mental health professionals can prescribe medication if needed.

Care Coordinator

A care coordinator answers questions, anticipates your child’s needs, and facilitates communication to make sure all your child’s specialists are working together. They may be able to help you find assistive devices like wheelchairs and walkers and understand your health insurance benefits. If your care center doesn’t offer a dedicated care coordinator, ask to speak with a social worker. Having someone to guide you can make getting the right care easier and less stressful.

Other Specialists

Your child’s care team might include other specialists, depending on their symptoms and how the disease progresses. You may need to recruit additional providers, such as the following:

• Dentist — Addresses jaw and tooth symptoms
• Gastroenterologist — Treats stomach and digestion issues
• Genetic counselor — Orders genetic testing and explains results
• Urologist — Manages problems like urine leakage caused by weak muscles
• Physiatrist (also called a physical medicine and rehabilitation doctor) — Supports physical function and mobility
• Speech therapist — Works on speech delays and swallowing difficulties
• Emergency physician — Provides quick care for serious heart or breathing problems

If you have questions about which specialists your child needs and when, their pediatrician, care coordinator, or other health care provider can offer advice.

How To Find Care Providers

Searching for DMD care providers offers an opportunity to ask for help and get support from others. Parents, nonprofits, and advocacy groups have worked for years to improve treatment options, create connections, and share resources.

Consider these tips when building your DMD care team:

• Ask your child’s pediatrician for referrals and suggestions.
• Join a support group and get recommendations from other parents.
• Explore Parent Project Muscular Dystrophy to find certified care centers.
• Search the Muscular Dystrophy Association (MDA) Care Center Network.
• Call or email the MDA Resource Center.
• Reach out to CureDuchenne to connect with other parents or DMD specialists.
• Speak with a social worker at your local children’s hospital for advice and resources.
• Contact your insurance provider to confirm coverage and find in-network specialists.

When caring for someone with a rare disease like DMD, it’s natural to feel lonely at times. However, you and your family are not alone. Many families understand your challenges and are ready to offer guidance and support. Lean on this community as you navigate care options. In time, you can give back by sharing what you’ve learned to help others.

Talk With Others Who Understand

On myMDteam, the social network for people with muscular dystrophy and their loved ones, members come together to ask questions, share advice, and connect with others who understand life with DMD and other types of muscular dystrophy. If you haven’t signed up for myMDteam yet, join today. It takes just minutes to set up your free account.

Do you need help building a DMD care team? Do you have tips for others? Share your experience in the comments below, or start a conversation by posting on your Activities page.