A Short List of Things to Know & Do Now

  1. Register with PPMD.
  2. Find a neuromuscular provider who knows how to care for patients living with Duchenne.
  3. Talk to your child’s healthcare provider about physical activity. Too much of some types of strenuous activity are bad for your child’s muscles.
  4. Ask your neuromuscular provider or physical therapist about stretching, and learn how to stretch your child’s muscles appropriately.
  5. If your child is getting physical therapy (PT), ask the therapist to contact PPMD for specific PT recommendations.
  6. Ask about the risks and benefits of starting corticosteroids (most children start before age 5yo).
  7. Duchenne is a progressive disease (meaning that it gets worse over time), but it gets worse very, very SLOWLY and patients progress at different rates.
  8. Most parents and families are able to adapt to living with Duchenne. It’s not easy and it takes time, but we can help you get there.

Learn more in our Get Care and Get Support sections.