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...
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
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.