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“It’s going to take a collaborative effort”: Extending the enthusiasm of Medicine X beyond campus

Lloyd Minor, MD, dean of the medical school, kicked off the second day of Stanford Medicine X by discussing some of today's challenges in health care. After outlining work being done here at Stanford, including in the area of precision health, Minor emphasized the importance of solutions coming from a wide range of sources. “My challenge to you is to take the energy and enthusiasm in this room and those watching at home and keep it focused on work you’re doing every day,” he said. “It’s going to take a collaborative effort – all of us working together to have the type of impact on health and health care that I know we can.”

In that spirit, the morning session featured several patient-advocates who are doing just that -- raising awareness about important issues and helping making improvements in health care both near and far.

One of those was South African native Vanessa Carter, a proponent of greater awareness about antibiotic resistance, whose story is captured above. After a serious car accident in 2004 left her unable to move and with severe damage to her face, Carter spent more than 10 years going through a series of surgeries. The damage kept coming back, though, and it was only after the prosthetic that had initially been placed in her face was removed that her doctors found that it was riddled with MRSA.

As part of her outreach work, Carter -- whose face is finally healed and who feels "like a human being again" -- is encouraging infection prevention through better hygiene and is encouraging the medical community to stop the over use of antibiotics. “Just like climate change, antibiotic resistance is a threat to every one of us globally," she said. "And if we don’t take action against it now as human beings living in one world, the microbial world will take over.”

Carter was followed by Ryan Prior, a journalist and Stanford Medicine X e-patient scholar who was diagnosed with chronic fatigue syndrome (sometimes called myalgic encephalomyelitis) as a high school student. “This is a disease that derailed my life. I couldn't play soccer. I couldn't hang out with my friends," he recalled. He believes that the commonly used name of the disease "is a slap in the face" to patients as it downplays its devastating nature.

"Patients experience a level of severity akin to late-stage AIDS or multiple sclerosis," he explained. "People sleep for 12 hours and feel like they haven't sleep at all. People walk for five minutes and it's like they've run a marathon. Yet there are no FDA approved treatments and no single lab test to diagnose it."

Prior says that, for now at least, he's one of the disease's "rare success stories" (he's well enough to maintain a full-time job, for example), and this gives him the ability to throw himself into his advocacy work. He co-directed a new documentary film, "The Forgotten Plague," that tells the stories of chronic fatigue patients who are living in the shadows. 

He hopes that shining a light on the disease will help offer hope to all those suffering from it. As for Prior's wishes for his own future? He hopes the "ticking time bomb inside of himself" doesn't prevent him from his dream of becoming a father. "I want to teach my son to build a fire under a starry sky," he said. "I want to teach my daughter to dance the salsa."

Previously: It's back! Stanford Medicine X returns to campus
Video courtesy of Stanford Medicine X

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