The Patient Advisory Group of the International Coordinating Committee for SMA Clinical Trials (which includes MDA, Families of SMA, Fight SMA and the SMA Foundation) has published a family-friendly version of a consensus statement on care of patients with SMA designed for physicians.
The family guide for SMA provides recommendations for diagnosis, monitoring and treatment of the disease. This is especially important for people living with SMA in communities without access to specialists and experts in SMA care.
The guide contains practical medical information that can be used as the basis for discussions with a family’s own doctors and health care team. Topics include confirming the diagnosis of SMA; managing breathing; managing eating and nutrition; managing movement and daily activities; and preparing for illness.
The guide makes it clear that it offers “recommendations, not rules,” and that specific decisions about treatment plans must be made with the help of many specialists and primary care providers.
The family guide can be found online at www.mda.org/publications/family_guide_sma_standard_of_care.pdf, or a hard copy can be sent to you by calling your local MDA office at (800) 572-1717.
The complete consensus statement, designed for physicians, can be found in the Journal of Child Neurology, Volume 22 Number 8, August 2007, 1027-1049; http://jcn.sagepub.com/cgi/reprint/22/8/1027.