Emma needs medicine around the clock – 32 syringes worth, administered through a gastrostomy tube because she can’t swallow. This likely will be the reality for the spunky 6-year-old for the rest of her life. She has cystinosis, a rare metabolic disease.
"The challenges of caring for Emma are complicated,” says her mother, Shelly. "We learn more all the time how best to keep her healthy."
With medical advancements, more children are surviving into adulthood with chronic health conditions – an estimated 5 million children and adolescents in the US alone.
A Better Approach
Studies show that chronic-illness care is most effective when driven by a holistic focus on wellness: achieving a healthy lifestyle, optimal nutrition, and emotional well-being for patient and family. But this is not the current standard of care for many children, says Emily von Scheven, MD, MAS, chief of rheumatology at UCSF Benioff Children’s Hospitals. Read More
