For years, Angel Parker, a nurse in her mid-20s, experienced daily bouts of excruciating pain that started in her legs and shot up her back. As a high school athlete, she became so debilitated she had to cut most physical activity — and suffered the consequences when she dared to go on an occasional light hike.
Tests for lupus and multiple sclerosis came back negative. No one could figure out what was wrong, and Parker’s discouraged parents fell into deep debt as they sought answers to what was causing their daughter’s agonizing and vexing symptoms.
In the engrossing new documentary series Diagnosis, from Netflix and The New York Times, Parker finally gets an answer. The seven-part show, streaming now, is based on Diagnosis, the long-running New York Times Magazine column by Dr. Lisa Sanders that follows patients searching for a name, and hopefully a cure, for their maladies. In effect, Diagnosis aims to answer a simple yet sometimes deceptively complex question: “Doctor, what’s wrong with me?”
For Parker, the answer finally comes via Marta, a researcher in an Italian pediatric hospital specializing in metabolic diseases. She reads Sanders’ column and reaches out to the doctor with some hunches. Parker travels to Italy for a comprehensive genetic analysis, and two months later, scientists there deliver remarkable news to her and her boyfriend Mac over video chat.
They’re 100 percent sure Parker has Carnitine Palmitoyltransferase Deficiency, a rare enzyme deficiency that causes muscle pain and weakness, among other symptoms but can be easily managed through lifestyle changes.
“It’s crazy what the internet can do,” Parker says through joyful tears in the episode that follows her story. “It just took one person from Italy and now I am a completely different person. There’s no more wondering. There’s no more mystery.”
This is exactly the sort of outcome Sanders, a professor of internal medicine at Yale University, hoped for when she decided to combine crowdsourcing, social media and medical expertise by inviting readers to ponder the cases she writes about and send in videos detailing their theories and personal experiences with similar ailments. Each episode tells the story of how crowdsourcing led to insights that had previously eluded doctors.
The cases featured in the series came to Sanders via friends, colleagues and producers of the show. The team behind the show wasn’t sure what to expect, but responses to Sander’s crowdsourcing call outpaced all projections, ranging from hundreds per case to more than 1,600. Sanders and her team spent many hours poring over the responses “one at a time; there’s no other way to do it, ” looking for the ones that appeared to hold promising information.
“It’s so amazing to be able to present a story and have it heard quite literally around the world — and have people talk back,” Sanders says. “And that’s really so much this moment in time. I still can’t get over it.”
The show starts streaming as the US gears up for the 2020 election, with health care access a central topic of discussion among candidates. Diagnosis producers say they never expressly intended to highlight any shortcomings in the American health care system, but they do hope the series fuels the conversation.
“We’re not out to slam the traditional medical establishment,” says co-producer Jonathan Chinn, “but we wanted to outline the fact that crowdsourcing could be an enhancement to it.”
Diagnosis isn’t the only show getting in on the conversation about democratizing health care. TNT is airing a weekly TV broadcast called Chasing the Cure, hosted by Ann Curry, that aims to help people with misdiagnosed illnesses find answers by interacting live with a group of doctors. On a companion site, people can browse case files and try to help solve spotlighted medical mysteries.
Sanders has been intrigued by medical mysteries since early in medical school, when she had a realization about illness. “There’s not one answer, but a dozen answers,” she says. “This is not the multiplication tables. This is Sherlock Holmes. This is detective work.”
Sanders’ Diagnosis column inspired the Fox TV show House, which starred Hugh Laurie as a misanthropic but brilliant diagnostician who could unravel virtually any medical mystery. She later consulted on the hit show.
Diagnosis episodes unfold like a real-life House, and it’s impossible not to root for the subjects as they search for long-sought answers and find comfort and community connecting with others who empathize with their experiences.
Subjects like Willy Reyes, a fun-loving 46-year-old Gulf War vet who describes suffering a seizure that left him with hearing and memory loss and mood swings. Or 6-year-old Kamiyah Morgan, who experiences temporary paralysis hundreds of times a day, causing her to lose motor control for up to 30 seconds at a time.
Though it’s ultimately doctors who order the tests and make the final diagnosis, the premise in this uplifting show is that the physicians have a far better chance of diagnosing rare conditions if a wider net is cast. And what’s wider than the internet?
“The doctor is not the only person who’s involved in the issue. The family is, the friends, the friends of friends who hear about it,” says Sanders, who appears on the show as a medical expert. “So doctors aren’t the only ones who have this experience to draw from.”
Not all patients in the series find answers. Real life isn’t an episode of House, after all, and some medical mysteries remain unsolved.
“We know more every year, but we have so much more to know,” Sanders says. “Of the people who don’t get a diagnosis right away, some tiny fragment are just going to have something that just hasn’t been discovered yet.”
Originally published Aug. 8.
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