A Short List of Things to Know & Do Now
- Register with PPMD.
- Find a neuromuscular care center with a team who knows how to care for patients living with Duchenne.
- 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.
- Ask your neuromuscular provider or physical therapist about stretching, and learn how to stretch your child’s muscles appropriately.
- Ask about the risks and benefits of starting corticosteroids (most children start before age 5).
- Ask your neuromuscular provider if there are approved therapies your child may be eligible for, and discuss the risks and benefits.
- Your child may be eligible for support services at school through an IEP or 504 plan.
- 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.
- Schedule a time to meet with PPMD’s care team and/or genetic counselors through PPMD For You to talk about your child’s diagnosis and answer any questions you may have.
- Take a moment to pause. This diagnosis is overwhelming and it can be difficult to know where to start and how to absorb all the new information. You are not alone in this journey, PPMD is here to come alongside you every step of the way.
Learn more in our Get Care and Get Support sections.