A committee convened by the American Academy of Neurology has published new recommendations for doctors who see children with congenital muscular dystrophy
posted on March 30, 2015 - 10:57am
This spring, the American Academy of Neurology (AAN) released a guideline for the diagnosis and care of children with congenital muscular dystrophy (CMD), a group of early-onset, genetic disorders that can involve skeletal (including respiratory) muscle weakness, heart problems, brain and eye abnormalities, and contractures (frozen joints).
An early-onset disease with many genetic causes
In the 1980s, our worlds changed forever, when our separate families each received the devastating news that our children had Duchenne muscular dystrophy. At the time of the diagnosis, we were told our boys probably would live into their mid-teens, or possibly early 20s.
Well, here we are — it’s 2010 and our boys are still here. Jason (Adele’s son), Patrick and David range in age from 24 to 30....