growing up

High school graduation made me feel mature, but I grew up the day I realized that I've never been alone in dealing with my disability

posted on July 1, 2011 - 4:12pm
It didn’t happen during my childhood, when I walked around wobbly with a pediatric walker, smiling and conversing. It didn’t happen in my sophomore year of high school, after an emergency room visit led to an 11-day hospital stay and a diagnosis of type 1 diabetes. It didn’t happen my senior year of high school, after a four-day hospital stay to implant a pacemaker to regulate my slow heartbeat....
posted on January 1, 2011 - 4:51pm
QUEST Vol. 18, No. 1
Pinalben “Pinky” Patel, 28, was born in a village in Western India and moved to the United States with her family four years later. She already was starting to show symptoms of Friedreich’s ataxia (FA). “My aunt and cousin took me trick-or-treating for the first time,” she says. “When we got home, my aunt complained that I kept falling down on purpose for attention. A couple years later my...
posted on October 1, 2009 - 3:10pm
QUEST Vol. 16, No. 4
Q: What could possibly be bad about children with neuromuscular diseases living longer life spans than has been common in the past? A: As these children become adolescents and then adults, they encounter a medical system and society that are not prepared to accommodate them.

'Palliative care' means more than 'end-of-life' care for children and families coping with muscle disease

posted on July 1, 2009 - 11:06am
QUEST Vol. 16, No. 3
Families face complicated health care decisions when coping with a child’s neuromuscular disease, and the best course of action isn’t always clear. Often, the child’s doctors are in uncharted territory too. Now, MDA is trying to provide a road map through this confusing, emotional time by offering families and physicians enhanced “palliative care” services for the children it serves.