Newly Diagnosed · Make Your First Medical Decisions
Make Your First
Medical Decisions
You do not need to make every decision at once.
Start by understanding the standard of care and the
first choices that usually come next.
What the standard of care means
The Standard of Care is a research-informed roadmap of medical knowledge and guidance for people with Duchenne. This page introduces what it means and how it connects to the first decisions families face.
For a deeper explanation of how the guidance was developed, why it matters, and how it applies differently to each child, visit the full Standard of Care Guide.
You do not need to learn everything today.
One step at a time is enough.
What the Standard of Care helps you understand
- What is typical to do (and when) based on research and experience
- Which areas of health to monitor over time
- The early choices most families face
- How decisions connect to your child's long-term health
- How to partner with your care team with confidence
What the Standard of Care Is—And What It Isn’t
Because the name sounds so formal, it’s easy to misunderstand what the Standard of Care actually is.
The Standard of Care IS
- A roadmap built from decades of research and experience.
- A collection of guidance-based recommendations.
- A guide that helps families understand common next steps.
- A framework for protecting your child's health over time.
- Something that evolves as research and evidence become available.
The Standard of Care is NOT
- A law.
- A rulebook.
- A checklist every family must complete.
- A one-size-fits-all treatment plan.
- A replacement for conversations with your healthcare team.
Every child with Duchenne is different.
The Standard of Care provides the roadmap.
Your healthcare team helps determine the best fit for your child.
The first decisions families usually face
Confirm and understand the diagnosis
Review results, ask questions, and learn what Duchenne means for your child.
Choose or establish neuromuscular care
Find a neuromuscular specialist and build a care team experienced in Duchenne.
Discuss corticosteroids
Understand the benefits, timing, options, and what to expect.
Begin baseline heart and lung monitoring
Set up routine cardiac and pulmonary evaluations to track your child's health.
Explore mutation-specific and emerging treatments
Learn what options may be available now or in the near future for your child.
Build the care plan gradually
Focus on the next right step—not everything—then adjust over time.
What does not have
to be decided today?
Some decisions are important, but not urgent. You have time to learn, reflect, and decide with your care team.
- Long-term school or activity plans
- Assistive equipment choices
- Advanced therapy decisions
- Travel or lifestyle changes
- Future care setting preferences
Your first job is not to master Duchenne.
It is to understand the next decision
in front of you.
Questions to take to the first appointments
- What are the most important things we should discuss?
- What should we expect in the next weeks and months?
- Which tests or evaluations does my child need first?
- What treatment options make sense for my child—and when?
- Who should be on our care team?
- How will you help us track progress over time?
- When can we find support from other families?
- What comes next after today's visit?
You are not alone in this journey.
Small steps lead to stronger tomorrows.