Currently there are no guidelines or medical standards of care for the treatment of patients with CMD. There are however two consensus statements for Duchenne muscular dystrophy that focus on both sedation/anesthesia and cardiopulmonary care. Not everything in these guidelines will apply to you or your child. However, these guidelines may serve as a helpful aide to your doctor and a discussion point about the issues you or your child may face. At Cure CMD, one of our goals will be to establish guidelines and published medical care standards for children and adults with CMD.
- American College of Chest Physicians consenus statement on the respiratory and related management of patients with Duchenne muscular dystrophy undergoing anesthesia or sedation. Chest 2007 Dec; 132 (6):1977-86
- American Thoracic Society. Respiratory Care of the Patient with Duchenne muscular dystrophy.
It may be helpful to bring a review article on CMD with you to your doctor’s visit. Most doctors will appreciate the opportunity to read and learn more about your or your child’s disease. Many doctors will not have heard of CMD or treated another person with CMD. You may be the most knowledgeable person in your local area on CMD. If you can empower and educate yourself, your treating physicians and become an active participant, you will notice real gains in your medical care and treatment. You may find some general review articles on the CMDs here.