CHILDREN Suffering at the Margins of Medicine

Kids with rare and complex diseases whose care is too complicated for mainstream medicine are being tossed around from specialist to specialist, abandoned and even accused of psychological disorders or of faking their illness. They often live with chronic pain and other complications, but are unable to get the help they need because they are considered too medically complex, or financially and legally risky—or, worse, because they or their parents may not be believed in the first place.

COMPLICATED focuses on one of the most prevalent and representative of these conditions, a connective-tissue disease called Ehler’s-Danlos syndrome (EDS), which creates multi-systemic challenges for patients and physicians. Disabling and in some cases fatal, EDS is estimated to afflict from 1-in-5000 to 1-in-2500 people worldwide (though many specialists say the number is likely far higher because it is underdiagnosed—so it may not be a rare disease at all). What differentiates EDS and other related illnesses is their invisibility—a lack of awareness and accurate diagnostics—and the perilous medical and legal maze in which pediatric patients, their families, and even the doctors who agree to treat them, find themselves adrift.

Desperately seeking multiple opinions and specialists, many parents of “complicated” kids (especially mothers) are suspected of over-medicalizing their children and risk being charged with medical child abuse, and losing custody or parental rights. On the other side, child abuse physicians and medical gatekeepers say they must remain vigilant of drug-seeking or attention-seeking behaviors and of psychological or physical abuse.

COMPLICATED takes the viewer into the hidden world of children coping and trying to live their lives with rare, complex and invisible illnesses, parents facing impossible choices to help them, and providers who dismiss them as "too complicated" or risk it all to save them.

In production


Andy Abrahams Wilson

Associate Producer
Sue St. Pierre