If you explored the Standard of Care when your family was first diagnosed, welcome back.
If this is your first visit, welcome.
Either way, one thing hasn't changed:
The Standard of Care is still your roadmap.
What has changed is where you are on the journey.
As Duchenne progresses, the questions families ask begin to change.
Instead of wondering what Duchenne is, many families begin asking:
- • "How do we protect the heart?"
- • "How do we preserve breathing?"
- • "How do we choose the right wheelchair?"
- • "How do we keep life full, active, and meaningful?"
Those questions are exactly what the Standard of Care is designed to help answer.
Just as in the early years, the goal isn't to react after problems appear.
It's to stay one step ahead whenever possible.
That means regular heart and lung monitoring, thoughtful equipment planning, protecting bone health, maintaining nutrition, preserving independence, and continuing to support emotional well-being alongside physical health.
Perhaps the biggest change during this stage is that the Standard of Care becomes less about preparing for the future and more about preserving quality of life today while protecting tomorrow.
The goal has never been simply to treat Duchenne.
The goal has always been to help people with Duchenne live longer, healthier, fuller lives.
That hasn't changed.
The roadmap is simply guiding you through a different stretch of the journey.
You do not need to learn everything today.
In fact, we hope you don't try.
Come back whenever you're ready.
One step at a time.
A shifting focus
What Changes During This Stage?
As Duchenne progresses, the Standard of Care evolves alongside it.
The goal remains the same—to help people with Duchenne live longer, healthier, fuller lives—but the focus begins to shift.
Protecting the heart and lungs becomes increasingly important. Mobility equipment and home adaptations become essential tools for maintaining independence. Bone health, nutrition, and routine monitoring play a larger role in preventing complications before they occur.
Perhaps most importantly, the Standard of Care continues to emphasize something that has always mattered:
Living a full life.
School.
Friendships.
Travel.
Hobbies.
Community.
Growing independence isn't just about adapting to change—it's about continuing to participate in the things that bring meaning and joy.
What comes next
Your Priorities During the Growing Independence Stage
While every person's journey is different, most families spend this stage focusing on six priorities.
The next sections explore each of these priorities in greater detail and explain how the Standard of Care helps support each one.
Cardiac Care
Routine cardiac monitoring, medications, and early intervention help protect heart function before symptoms develop.
Pulmonary Care
Breathing assessments, airway clearance, sleep monitoring, and respiratory support help preserve lung health throughout this stage.
Medications & Therapies
Steroids, cardiac medications, respiratory therapies, rehabilitation, and other treatments work together to support long-term health.
Bone Health & Nutrition
Bone density, nutrition, fracture prevention, weight management, and gastrointestinal health become increasingly important as mobility changes.
Routine Monitoring
Regular clinic visits, laboratory testing, imaging, therapy evaluations, and preventive care allow healthcare teams to identify changes early.
Coordinated Care
Neurology, cardiology, pulmonology, rehabilitation medicine, physical therapy, occupational therapy, nutrition, psychology, and primary care continue working together as one team.