Support & Care Materials
Care Guide for Families
The updated Guide for Families can be used in different ways. You might find it easier to focus on a specific stage of Duchenne, or it may be more helpful to concentrate on a specific area related to care, such as steroids, cardiac, etc. We are hopeful that you will find this a useful tool for all those you are in contact with along this journey – parents, grandparents, teachers, physicians.
New Diagnoses & Early Care Guide
PPMD developed a comprehensive guide to provide accurate information that is easier-to-digest, and will help families to navigate caring for a child with Duchenne while maintaining a happy, rewarding life. This guide is broken down into four main themes, and we recommend families reading at their own pace and comfort level.
- What is Duchenne Muscular Dystrophy?
- Adjusting to the Diagnosis & Finding Support
- Care Considerations
- Research & Clinical Trials
Care Imperatives – Pediatric
Imperatives for Duchenne MD is a very focused and very brief, single-page snapshot of the imperative components of comprehensive pediatric Duchenne care as described in the Care Considerations. This document is intended as a snapshot of care from diagnosis through early adolescence, helpful for medical providers who may not be familiar with this diagnosis.
Care Imperatives – For Adults
The Adult Imperatives for Duchenne MD describes the imperative components of transitions of care across late adolescence and adulthood as described in the Care Considerations. This document is intended as a brief, single page snapshot of care, helpful for medical providers who may not be familiar with caring for adult men living with Duchenne.
PPMD knows that keeping track of all elements of your/your child’s care can be overwhelming and confusing. For this reason, we have created a series of care checklists for families to track and understand recommended care relative to each stage of disease progression. These checklists are meant to be a resource to help organize and navigate the many moving parts of Duchenne care.
- Early ambulatory/childhood (Download)
- Late ambulatory (Download)
- Early non-ambulatory (Download)
- Late non-ambulatory (Download)
PJ Nicholoff Steroid Protocol
Patients taking chronic daily steroids are often found to have ineffective cortisol coverage, which can lead to adrenal crisis, in the case of a severe injury or illness, or during a surgical experience. The PJ Nicholoff Steroid protocol was developed, and published, to address all issues around steroid associated issues.
Range of Motion Guide
Working to prevent contractures proactively (before they occur) is always best. Contractures are not always preventable. If they do occur, there are ways to manage contractures and maximize the function of the joint. PPMD worked with a team of expert Physical Therapists (PTs) to develop an easy to follow Range of Motion handout (download) for parents and physical therapists. This handout summarizes the current physical therapy guidelines.
Education Matters Guides
To better assist parents and teachers in providing a quality education for the student with Duchenne, PPMD has created Education Matters Guides specifically for teachers and physical education teachers. The guides cover everything from the basics of Duchenne and its progression to specific classroom accommodations organized by age group.
Emergency Information – Wallet Card
This simple, yet extremely important card for your wallet will help you talk to doctors, nurses, and hospital administration, if your child suddenly becomes sick or injured.
Emergency Information – Large Weatherproof Card
These new emergency cards are larger in size, weatherproof, and include a chain for easy attachment to backpacks, scooters, strollers, wheelchairs, and other mobility devices. The cards are two-sided; one side emphasizes important information for families and emergency contact information, and the other side is directed towards healthcare professionals/first responders taking care of your or your child.
Duchenne Info – Wallet Card
Based on idea that Arizona parent Jill Castle had, this business card is an easy way for you to educate someone you run into about Duchenne muscular dystrophy. When you are at a loss for words or don’t have the time to explain Duchenne, this card is all you need to say.