United in care: Your DMD medical team

Last updated March 7, 2025, by Mary Chapman
Fact-checked by Patrícia Silva, PhD

Getting the best treatment for Duchenne muscular dystrophy (DMD) requires a diverse team of healthcare specialists, from doctors to physical and occupational therapists to mental health providers. A coordinated, comprehensive multidisciplinary care approach can help those living with DMD and their caregivers better manage the condition.

DMD, which is the most common type of muscular dystrophy, is a neuromuscular disease that mostly affects boys and men. It causes progressive muscle weakness and wasting, and a range of other symptoms that vary from person to person.

The progression of DMD and its severity also will vary, as the disease will be different for each person who has it. Which doctors, including specialists, will be a regular part of your child’s DMD care team will be determined by the specific symptoms and needs your child has.

Building your DMD care team

Once a diagnosis of DMD has been confirmed, you should start thinking about your child’s DMD care team. That will help ensure the team you build can meet your child’s specific needs. DMD treatment and its management require the input of a variety of specialists who will provide multidisciplinary care covering all aspects of Duchenne throughout the disease’s progression.

Typically, you’ll work with a neurologist with expertise in neuromuscular conditions, and ideally DMD, to put together a comprehensive team of subspecialists. Each subspecialist will suggest the most appropriate care plan.

Your child’s neurologist may also be the DMD doctor who is the leader of your DMD care team. The team may also have a care coordinator to help you and the team members communicate with one another. They can also connect you with other types of resources and possibly help with your child’s mental and emotional health needs.

In addition to a neurologist, your DMD care team may include various therapists and other health professionals:

A physical therapist focuses on maintaining flexibility, muscle strength, and range of motion, while also addressing any mobility changes.
An occupational therapist can assess your child and suggest ways to help navigate day-to-day life, allowing for as independent a life as possible.
A cardiologist can address heart problems such as cardiomyopathy, cardiac arrhythmias, and heart failure caused by damage to muscles in the heart.
An orthopedist manages DMD bone and joint issues such as scoliosis, or curvature of the spine, and contractures that affect joint movement.
A pulmonologist treats respiratory issues caused by weakened muscles to better support lung health.
An endocrinologist addresses potential endocrine complications, especially those related to side effects of steroid treatments that often are used to manage DMD.
A nutritionist supports weight management and proper nutrition, as muscle weakness in the digestive tract can lead to constipation and other digestive issues.
A speech-language therapist addresses speech and swallowing problems.
A genetic counselor can provide insights into the genetic aspects of DMD for families, including for female members who may be DMD carriers.
Mental health professionals give psychological and emotional support, and can provide useful strategies for living with DMD.

In addition to the DMD care team, your child will still need a primary care provider (PCP) for managing general health, such as common childhood illnesses. The PCP should collaborate with your DMD team for issues that may be related to, or worsened by, DMD treatment or any other issues related to your child’s Duchenne diagnosis.

The role of coordinated care

Coordinated care plays an essential role in Duchenne muscular dystrophy by bringing together a multidisciplinary team of specialists to manage and treat your loved one’s complex medical needs.

The benefits of coordinated care in DMD may include:

improvements in care consistency and potentially less need to see some specialists
better communication between you as the DMD caregiver and the specialists treating your child
early identification and management of potential complications such as heart or respiratory problems
better overall health and quality of life for your child.

Family and caregivers

You and your family can play a key role in coordinated care by being an advocate for your child with the healthcare team, taking part in care plan decisions, and ensuring your child adheres to treatment plans.

Being a DMD caregiver may also involve:

acting on your child’s behalf to ensure any individual concerns and preferences are always considered
overseeing healthcare appointments and communication among healthcare providers
assisting with arranging at-home interventions such as with a physical therapist
monitoring your child’s condition on a day-to-day basis
contacting the neurologist or other specialists when you notice any changes in health
connecting your child and family with others in the DMD community.

You and other family members should also support your child in adapting to any medical changes, which may be eased with emotional guidance and stability.

Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.