Respiratory infections can become serious more quickly in people living with Duchenne muscular dystrophy (DMD) because respiratory muscles weaken over time. Understanding how to recognize symptoms early, use airway clearance techniques effectively, and know when to seek medical care can help reduce complications and improve outcomes.
At the CureDuchenne FUTURES 2026 Annual Conference, families gathered to learn from experts about one of the most important aspects of Duchenne muscular dystrophy care: managing respiratory illness. During this session, Dr. Oscar H. Mayer, attending pulmonologist and Director of the Pulmonary Function Laboratory at Children’s Hospital of Philadelphia, joined CureDuchenne’s Chief Medical Advisor Dr. Brenda Wong to share practical strategies for recognizing respiratory infections early, using airway clearance techniques effectively, and advocating for appropriate care in both home and hospital settings.
Dr. Mayer emphasized a central theme throughout the session:
“The most critical aspect of acute care in muscular dystrophy is being early and aggressive with therapy and then having a plan and being prepared to utilize the plan.”
Why Respiratory Illness Requires Special Attention
As Duchenne muscular dystrophy progresses, the muscles involved in breathing and coughing gradually weaken. This can make it harder to take deep breaths, clear mucus, and recover from respiratory infections.
While a cold may be a minor inconvenience for most people, it can become much more serious for someone with Duchenne. When mucus cannot be cleared effectively, it can increase the risk of pneumonia, mucus plugging, and respiratory failure.
Because of this, families should be prepared to respond quickly when symptoms appear.
Recognizing Respiratory Illness Early
One of the most important takeaways from the session was the importance of early recognition.
Common signs of a developing respiratory illness include:
- Increased nasal congestion or secretions
- More frequent coughing
- Fatigue or decreased energy
- Fever
- Difficulty clearing mucus
- Changes in breathing patterns
Dr. Mayer emphasized that even if a person with Duchenne can usually cough effectively, that can change during a respiratory illness. When the body is working harder to breathe, respiratory muscles can tire more quickly, making it more difficult to clear mucus and secretions from the lungs.
The earlier an illness is identified, the sooner families can begin interventions that may prevent more serious complications.
Making a Respiratory Action Plan
Families should work with their care teams to create a respiratory action plan before illness occurs, including.
- Airway clearance strategies
- Ventilation support recommendations
- Contact information for healthcare providers
- Guidelines for when to seek urgent medical care
- A list of equipment and supplies needed during illness
“Having a proper plan can really give you a sense of calm and peace and understanding of what you need to do.”
- Dr. Oscar H. Mayer
Airway Clearance Is Essential
A major focus of the presentation was airway clearance.
According to Dr. Mayer, there are three primary ways to remove mucus from the airways:
- Effective coughing
- Mechanical insufflation-exsufflation (cough assist)
- Suctioning
Many families are familiar with cough assist devices, which help simulate a natural cough by delivering positive pressure followed by negative pressure to move mucus out of the lungs.
The session also reviewed therapies that can help loosen mucus, including saline nebulizer treatments, chest physiotherapy, and other airway clearance techniques. However, Dr. Oscar Henry Mayer stressed an important point: loosening mucus is only part of the process. Secretions must ultimately be removed through coughing, cough assist, or suctioning.
Supporting Breathing During Illness
Respiratory infections place additional demands on the body and can worsen respiratory muscle fatigue.
For individuals already using nighttime ventilation, temporary daytime use may provide valuable support during illness. Even people who do not routinely require ventilation may benefit from additional respiratory support when sick.
The session highlighted an important principle in Duchenne respiratory care: treatment of low oxygen levels with oxygen should be accompanied by the monitoring of CO2 levels.
Because respiratory muscle weakness can lead to inadequate ventilation resulting in CO2 retention, healthcare providers should first evaluate whether carbon dioxide retention and ineffective breathing are contributing to the problem. Supporting ventilation and clearing secretions is needed to address the underlying issue of hypoventilation; giving oxygen alone to treat hypoxemia is not adequate.
Knowing When to Seek Additional Care
Families should never hesitate to contact their healthcare team when they have concerns.
Signs that additional medical evaluation may be needed include:
- Worsening respiratory symptoms
- Declining oxygen levels
- Increased work of breathing
- Difficulty managing secretions
- Changes in alertness or behavior
- Care needs that become difficult to manage at home
Dr. Mayer encouraged families to seek guidance early rather than waiting for symptoms to become severe.
The Importance of Advocacy
One of the most powerful themes throughout the session was advocacy.
Many emergency departments and community hospitals may have limited experience caring for individuals with DMD. As a result, families often find themselves educating healthcare providers about their loved one’s specific respiratory needs.
Parents and caregivers were encouraged to bring respiratory equipment, share care plans, and communicate clearly about what treatments have worked in the past.
CureDuchenne has resources that can also help families advocate for evidence-based care during hospital visits.
As Dr. Mayer noted, families know their children best and play a critical role in ensuring their wishes and care plans are understood and respected.
Key Takeaways for Families
The session concluded with a few simple but powerful messages:
- Recognize respiratory illness early.
- Have a respiratory action plan in place.
- Use airway clearance strategies consistently and aggressively when needed.
- Support ventilation appropriately during illness.
- Seek medical guidance before a situation becomes an emergency.
- Advocate for care that follows established Duchenne respiratory guidelines.
Most importantly, families were reminded that preparation can make all the difference. By understanding respiratory care strategies and partnering closely with their healthcare teams, families can help reduce complications and improve outcomes during respiratory illnesses.
Need Personalized Support for Your Duchenne Journey?
Families don’t have to navigate respiratory challenges alone. The CureDuchenne Cares team provides personalized guidance, educational resources, and one-on-one support to help families make informed care decisions throughout every stage of Duchenne.
- Register for the CureDuchenne FUTURES Annual Conference to hear the latest in Duchenne care
This content is intended for educational and informational purposes only and should not be considered medical advice. Always consult your healthcare provider before making decisions about your medical care or treatment plan.
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