How are patients with SMA cared for?
Many people living with SMA need constant, ongoing care from their families and from a variety of medical specialists. The Family Guide to the Consensus Statement for Standard of Care in SMA, prepared by the Patient Advisory Group of the International Coordinating Committee for SMA Clinical Trials, highlights the following five recommendations for care of children with SMA: • Confirm the diagnosis of SMA – Confirmation of SMA diagnosis with a simple genetic blood test can help medical professionals plan for and provide disease-specific patient care. • Manage breathing – Respiratory problems are the top cause of illness and the most common cause of death among children with SMA Type I and II. Patients and families can learn about and practice techniques to maintain a clear airway, take measures to prevent respiratory problems, and learn how to minimize the impact of respiratory infection. • Manage eating and nutrition – Children with SMA are susceptible to over- and under-nutrition prob
