DuchenneConnect’s Care and Management Fact Sheet

Clinician Introduction

Below you will find a fact sheet that we at DuchenneConnect have developed for patients and families. We encourage medical care providers to share this fact sheet with families affected by Duchenne or Becker muscular dystrophy. As you will read, we suggest that patients bring this fact sheet, linked materials, and their DuchenneConnect profile to their visits with you, to help focus their discussions on areas of concern.

Family Introduction

There are many different ways to care for Duchenne and Becker muscular dystrophies.  The goal of care is to provide the best quality of life through all life stages. While there is not yet one “gold standard” that tells healthcare providers exactly how to treat muscular dystrophy, the care described in this fact sheet may help keep muscles as strong as possible and prevent and treat complications. 

In late 2009, we received guidance about care and management from the Centers for Disease Control and Prevention (CDC) expert Care Considerations panel.  We will have family-friendly fact sheets about the Care Considerations soon. For now, we think that it is important that families are able to read recommendations from as many groups as possible, while we all work to figure out the best care plans.

The information in these pages is not meant to replace the knowledge and experience of your healthcare providers, but instead may give you tips about topics to discuss with your providers. Most of the care information is focused on Duchenne muscular dystrophy.  Care recommendations for Becker muscular dystrophy are important, but are still early in development.  Because the symptoms of Duchenne are generally more severe and happen earlier in life than symptoms of Becker muscular dystrophy, the recommendations in this fact sheet may be too strong or too early for people with Becker muscular dystrophy. These are important topics, though, for anyone with a dystrophinopathy to discuss with their health care provider.

How Families Use the DuchenneConnect Family Fact Sheet

Each section in the fact sheet includes a brief overview of care, plus a link to the corresponding section in a TREAT-NMD fact sheet, and/or a link to an article in a medical journal and from Parent Project Muscular Dystrophy. The articles may be difficult to understand if you have not had medical training, but we encourage you to bring any articles of interest, this fact sheet, and the TREAT-NMD fact sheet to your healthcare provider at your next visit. If you have created a profile, we also suggest that you to bring your profile report to your visit. By bringing a printed copy of your profile and some or all of this fact sheet to your appointments, you can focus discussions with your medical provider on the topics most important to you. Seeing your profile gives your healthcare provider a chance to verify and fill in any missing information. This may help you better understand your/your child's needs and care options. Used together, the profile report and topics from the care sheets can be important tools that allow you to better understand yesterday's history, today's needs, and tomorrow's opportunities.

It is also important to remember that each individual, regardless of his or her particular diagnosis, has his or her own particular health issues, while other areas that may not be problems at all.  Therefore, all of the information in this fact sheet might not apply to each person.