- Thomas Sejersen Thomas Sejersen holds positions as Professor in Neuropediatrics at the Department of Women's and Children's...
The consensus document The Diagnosis and management of Duchenne muscular dystrophy was published over two editions of the Lancet Neurology in January and February 2010. The result of a three-year-long project guided by the US Centers for Disease Control (CDC) and with input from 84 leading DMD specialists worldwide, this article is a valuable resource for doctors and therapists involved in DMD care, as well as for individuals with DMD and their families. However, as an academic publication, it is not always written in language accessible to people without a medical background.
The Muscular Dystrophy Association, Parent Project Muscular Dystrophy, TREAT-NMD and the United Parent Project Muscular Dystrophy have therefore worked together to produce a comprehensive "guide for families" based closely on the full academic article. The guide can be used on its own or as a supplement to the academic document, and we hope that individuals with Duchenne and their families can use it in collaboration with their care providers to discuss their own specific care needs.
The family guide has been produced in various different formats and will be appearing in many different languages in the near future. In many countries, printed brochures will be available from your own patient organisations. An overview of the "online" versions is provided below.
1) Family guide brochure with images
This version is based on the printed brochure and contains many photos, kindly provided by Duchenne patient organisations around the world. Please be aware that this file contains many images and graphics and will use a lot of ink when printed out. If you want to print this guide you might prefer to scroll down for the printer-friendly version.
2) "Printer-friendly" version
This version contains the same text as the brochure-style version above, but it has been formatted for easier printing (it has larger pages and the photos have been removed).
Click here to find out which languages the family guide is currently being translated into.