S.I.2 Lungs and muscle: How are we doing?

Abstract

<h2>Abstract</h2> In 2011 in the US, there were reported to be dozens of adults with Duchenne muscular dystrophy over the age of 30. Survival for spinal muscular atrophy type 1 in the US climbed from less than 2years of age before 1995 to over 5years in 2002. Two years ago, MDA USA launched a new website called Transitions Center for young adults with neuromuscular disease. Valerie Cwik has said there is a "new face" of muscular dystrophy and it is that of a young professional with a college or higher degree, full time employment and his own family. All this represents success with treating the complications of neuromuscular disease in childhood so that our patients make it to adulthood, with quality and purpose in life. Much of this success can be attributed to improved management of pulmonary complications. Fifteen years ago, such high tech management and understanding of what works were available to the few who had access to sub specialists and multidisciplinary care teams. Since then, standard of care consensus statements have been published for many rare neuromuscular diseases as well as the most common forms of muscular dystrophy. Patients take responsibility for their own choices and often teach their physicians what is recommended. As a result, we now have data to show what works not only to prolong life, but how to avoid hospitalization and loss or school/work time.