Morgan Gleason is one of 3 in a million. Just 15, she was diagnosed in 2010 with Juvenile Dermatomyositis, an inflammatory disease of the muscle, skin and blood vessels, according ton the American College of Rheumatology. There’s no cause, no cure and the treatment sounds positively awful — the treatment puts her at risk of contracting “the painful and serious condition of aseptic meningitis,” her mother writes.

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And so it was that Morgan found herself hospitalized to treat aseptic meningitis. But she became fed up by the constant early morning interruptions by the medical team charged with caring for her. Her mother recorded this video of Morgan demanding better treatment. “They come in at 6 in the morning and they don’t all come together.”  “I need sleep … I’ve tried to tell them, I give better answers, I’ll participate more,” if I get enough sleep. “I am a patient, and I demand to be heard,” she says. Anyone who has been in the hospital can probably relate.

Gleason has become the latest powerful spokesperson for the engaged patient movement.

 

Author

Lisa Aliferis

Lisa Aliferis is the founding editor of KQED's State of Health blog. Since 2011, she's been writing stories and editing them for the site. Before taking up blogging, she toiled for many years producing health stories for television, including Dateline NBC and San Francisco's CBS affiliate, KPIX-TV. She also wrote up a handy guide to the Affordable Care Act, especially for Californians. You can follow her on Twitter: @laliferis

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