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Addiction, Media, Medicine and Society, Mental Health, Technology

Patient tells how social media helped her overcome the “shame” of her eating disorder

Patient tells how social media helped her overcome the "shame" of her eating disorder

3375657138_d025fc4092_bMany of us turn to our friends and families for encouragement when times are tough. So it’s no wonder that social media sites have also become important sources of emotional support for people with illnesses.

Recently, a story over on MindBodyGreen highlighted how one woman used Facebook as a tool to help her overcome the shame and deception that hampered her recovery from her eating disorder. As Lindsey Hall explains:

Two months into rehab, I was still struggling with letting go of the games of my eating disorder. Transitioning from in-patient to out, I’d been rapidly finding myself falling backwards instead of forwards.

Here I was, 24 years old, still living some days bagel by bagel, still opening the door to deception, and guilt and shame. I knew on some level that admitting to my eating disorder on social media would be a way for me to stop the show. I knew I needed to own this struggle in order to own all of myself, and to continue on my journey learning the art of self-acceptance.

As Hall describes in the story, her decision to make her eating disorder public on Facebook was a leap of faith with no guarantee that it was the right thing to do:

I’ll never really know what drove me to write that Facebook status, but I posted it anyway to the open arms of nearly 2,500 “friends” and family, to people that had met me once at a bar or sat next to on a plane. Having lived so long behind a smoke screen, I was ready to expose myself. I needed to feel bare, even while broken, in order to be able to clean my slate, and start from scratch in reconstructing my life.

The feedback Hall received from her gutsy post on Facebook and the subsequent blog posts and stories about her eating disorder haven’t always been positive, but as Hall explains, that wasn’t that point. Hall’s eating disorder is public information now, and this new level of accountability has helped her keep her eating habits on track.

Previously: Incorporating the family in helping teens overcome eating disordersA growing consensus for revamping anorexia nervosa treatmentPossible predictors of longer-term recovery from eating disordersGrieving on Facebook: A personal story and How patients use social media to foster support systems, connect with physicians
Photo by .craig

Addiction, FDA, Health Policy, Medicine and Society, Public Health, Public Safety

To keep edibles away from kids, marijuana policies must be “fully baked”

To keep edibles away from kids, marijuana policies must be "fully baked"

sanfran031606_fig1_highresDepending on your position, legal marijuana might raise images of stoners on every street corner or of users enjoying a private puff in their backyards. However you probably don’t picture a child munching on a pot-laden brownie she found in her kitchen cupboard.

But as Stanford legal experts Robert MacCoun, PhD, and Michelle Mello, JD, PhD, point out in a commentary published today in the New England Journal of Medicine, the loose state regulation of marijuana edibles creates some unnecessarily and potentially serious public health risks that should concern everyone.

Packaged in brightly colored wrappers, edibles often mimic popular sweets, but they contain a powerful dollop of tetrahydrocannabinol (THC), the chemical responsible for marijuana’s psychoactive effects. Some edibles contain multiple “servings” of THC per package.

Both Colorado and Washington — the two states with legal recreational marijuana — require “child-resistant” packaging and a warning to “keep out of the reach of children.” But edibles remain quite attractive to children, who may confuse them with regular candies and snacks, and potentially deceptive to adults, who may assume one bar is a just one serving. “I look at these packages and I get hungry just looking at them,” MacCoun said.

The edibles are not regulated as either a food or a drug by the U.S. Food and Drug Administration, because the federal government considers marijuana illegal. Legalizing states have been slow to fill the gap, and have done so incompletely, Mello said. “This is sort of a weird space that’s betwixt and between federal and state oversight,” she said.

It’s time for the medical community to get involved, MacCoun said. “Most people don’t understand the brain metabolizes chemicals ingested by mouth differently than those smoked.”

Ingested marijuana offers a delayed high, so people keep eating thinking they are fine. The intoxication lasts longer and is associated with more hallucinations and perceptual distortions, he said. “It’s almost like a different drug.”

For now, the issue is most pressing in Colorado and Washington, but many other states are considering legalizing recreational marijuana, including California, MacCoun said.

“We’re not taking some strong position these products should be banned. Sensible and fairly modest regulations would reduce the risk without greatly restricting people’s freedom to consume these products,” MacCoun said.

Previously: Discussing the American Academy of Pediatrics’ call to put the brakes on marijuana legalization, To protect teens’ health, marijuana should not be legalized, says American Academy of Pediatrics and Medical marijuana not safe for kids, Packard Children’s doc says
Photo by DEA

Cancer, Medicine and Society, Patient Care, Public Health, Videos

March marks National Colon Cancer Awareness Month: The takeaway? It’s preventable

March marks National Colon Cancer Awareness Month: The takeaway? It's preventable

What is the leading, preventable cause of death in the United States? I suppose the headline gave away my punchline, but remembering that colon cancer is both deadly and preventable is a timely exercise during March, which is National Colon Cancer Awareness Month.

Here’s what you need to know: Don’t wait until your colon hurts to come to the doctor. That won’t work. “Polyps and early tumors are often not symptomatic,” said gastroenterologist Uri Ladabaum, MD, in the above Stanford Health Care video.

It’s best to catch cancer 10 years before it appears, making 50 a key age to spot a cancer that often appears in the 60s,  said endoscopy director Subhas Banerjee, MD.

And a prime screening procedure, colonoscopy, “is no big deal,” said oncologist Mark Welton, MD. “They give you a little sedation and the next thing you know is you’re saying, ‘Are we done?'”

If physicians do spot the cancer early — or even later — they can often remove it, the physicians agreed. Chemotherapy and surgery are continuing to improve, making it more likely that patients can continue to live long, healthy lives.

Family history and race can leave you more vulnerable to colon cancer — African Americans are more likely to get, and die from, the disease — but in general, a fruit-and-vegetable packed diet, avoiding smoking and getting regular exercise can help stave off colon cancer.

Previously: The Big Bang model of human colon cancer, Stanford researchers explore new ways of identifying colon cancer and Study shows evidence-based care eliminates racial disparity in colon-cancer survival rates 

Chronic Disease, Health Policy, In the News, Medicine and Society, Medicine X

Patients with “invisible illnesses” speak out about challenges in their communities and workplaces

3477601702_765d0c9504_zWhat does a patient with chronic disease look like? Sometimes they look like everyone else, as many diagnosed with “invisible illnesses” are pointing out. In a recent NPR story, Carly Medosch, a former ePatient scholar at Stanford’s Medicine X, speaks about discrimination in the workplace for those whose health challenges are not immediately obvious. Medosch has been living with Crohn’s disease for 20 years and fibromyalgia for one year.

From NPR’s write-up:

For Medosch and others who struggle with an invisible disability, occasional hospital stays and surgeries are not the hard part. Mundane, everyday activities can be more difficult… Walking to the subway or even bending down to pick something up can take a lot out of her. But that isn’t apparent from the outside.

“I kind of call it being able to pass,” she says. “So I can pass as a normal, healthy, average person, which is great and definitely helps ease my everyday life — especially in interactions with strangers, getting your foot in the door in a situation like a job interview.”

But a foot in the door doesn’t mean people are sympathetic: Wayne Connell, who founded the Invisible Disabilities Association after his wife was diagnosed with Lyme disease and multiple sclerosis, is also quoted in the piece:

We’d park in disabled parking and she didn’t use a wheelchair or a cane, and so people would always give us dirty looks and scream at us… When they see someone in a wheelchair, OK, they get that they’re in a wheelchair. But what if they have chronic pain, what if they have PTSD — anything from cancer to peripheral neuropathy to autism?

Perhaps more importantly, disabled people have legal rights that are being ignored. Joyce Smithey, a lawyer who specializes in labor and employment, says it’s not uncommon for employers to say “We don’t do that as a policy” when people with invisible disabilities request accommodations. Smithy says:

And that’s a problem, because that person is not asking to partake of a benefit that’s offered in a policy; that person is asking for an accommodation they’re entitled to under the law.

Previously: When you say nothing at all: Living with an invisible illness, and How to cope with an “invisible illness”
Photo by Hugo Chisholm

Media, Medical Education, Medicine and Society, Research, Stanford News

Anthropologist discusses Wikipedia’s implications for health information

Anthropologist discusses Wikipedia's implications for health information

pid_24010Many of us turn to Wikipedia for quick answers to medical questions: What’s an amniocentesis, or what’s the difference between autism and Asperger’s?

Stanford University Press recently published Common Knowledge: An Ethnography of Wikipedia by anthropologist Dariusz Jemielniak, PhD, who studies managerial culture and has long been active in the Wikipedia community. As a fellow anthropologist, I was curious about his perspective and I wondered how medical knowledge is different in the age of Wikipedia.

When I interviewed the personable Jemielniak, he offered some insightful answers to my questions:

How empowering is it for people to have knowledge at their fingertips, on the internet? How is this different from finding information in reference books?

The basic difference is that on Wikipedia it’s usually put in lay terms. It’s readable, it’s comprehensible… With information, people have the perception that they know something about their condition. I’m not sure if they’re right – obviously, knowledge is not just one tidbit of information. On Wikipedia you can’t learn the relations between all kinds of knowledge – you need to have a medical degree to really understand that – but patients feel they are operating in a situation of informational deficit… Information on Wikipedia probably makes people have this feeling of empowerment, though I’m not really certain whether in all cases this contributes to their overall health. Sometimes they’ll misunderstand, misconstrue, or misinterpret because they don’t have the systematic knowledge.

In your ethnography, you discuss how the decentralized power in Wikipedia’s management changes the knowledge structure away from institutions and certified expertise. Without an authority structure, how do you determine who’s an expert?

On Wikipedia, the point is you don’t have to know if someone is an expert… Trust is transferred from formal expertise to procedure. If you follow procedure to the letter, by default you’re producing proper knowledge. If you use correct sources, if you cite all the sources that you found, if you’re doing justice to whatever you read, by default on Wikipedia it’s assumed that you’re just as good as an expert.

What about biases? In the book you say biases usually get toned down through copious editing.

I think on Wikipedia there’s a strong scientific bias of a sort. If a community of people are contradicting what is considered to be the scientific knowledge, quite likely those activist groups will be ignored. If there is consensus in the academic world, this is what will prevail in Wikipedia.

You say Wikipedia is never “published” but in an ongoing process of creation. Is this better for updates about new research?

By all means, I think obviously. Thirty seconds after the new pope was elected this new information was on Wikipedia. On Britannica you’d probably have to wait one year. Traditional media takes a year to go through the publishing process. The continuous release mode that Wikipedia operates on allows for instantaneous improvements and corrections, which is wonderful, it’s really great.

The pope is one thing, but research? How often are pages on research updated?

One of the problems is that research on Wikipedia is accurate at time of writing the article, but gets obsolete if people do not update. Articles that are most updated are ones people care most about… The real question is how many people actually read the incorrect information? Chances are, if there’s a big proportion of people who care about a topic… the more likely it is to be updated.

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LGBT, Medicine and Society, Research, Sexual Health, Stanford News

Asexuality: “That doesn’t mean there is something wrong”

Asexuality: "That doesn't mean there is something wrong"

7719085120_8119b3bfbe_zAs a scholar with ties in both humanities and medicine, I’m always interested when those realms intersect. Medical understanding of sexuality has been heavily influenced by social science and humanities research, and now a new frontier in sexuality studies, asexuality, is being pioneered at Stanford. 

Karli Cerankowski, PhD, who graduated from Stanford’s Program in Modern Thought and Literature last year and is a lecturer in Stanford’s Program in Writing and Rhetoric, is working on broadening our perception of healthy sexuality by including lower levels of sexual or romantic desire. Her work, recently spotlighted by Stanford News, traces people who might now identify as asexual through historical and pop cultural works, analyzing how they and society have interacted. She’s quoted in the Stanford News piece as saying that “society has normalized certain levels of sexual desire while pathologizing others. In a sense, it’s the social model that’s broken, not asexuals.”

Asexuality is a very new field of study, which exists under the wide umbrella of sexuality and gender studies. Cerankowski and her co-editor, Megan Milks, recently published the second book ever to be written on the topic. Thinking about the ways people experience their sexuality, desire, and gender informs how science and medicine understand optimal human health. Although sex and sexuality occupy a prominent place in our culture’s understanding of bodies, they are not prominent for every individual.

Cerankowski, again quoted in Stanford News, says:

If we recognize the diversity of human sexuality, then we can understand that there are some people who just don’t experience sexual attraction or have a lower sex drive or have less sex, and that doesn’t mean there is something wrong with them… We sort of prioritize sexual pleasure and sexual fulfillment in our lives, but we can think about the other ways that people experience intense pleasure, like when listening to music.

Pleasure and desire are important aspects of being human, but they don’t have to be tied to sex, or even to romance. On the wide spectrum of asexuality, there is room for those who engage neither in sex nor romance, as well as those who enjoy a romantic partnership and may engage in sex for reasons other than personal desire. This spectrum intersects with other aspects of sexuality that have also, though activism, become recognized as spectrums: sexual orientation, sexual identification, and gender identification.

Previously: Med students want more sexual health training, Changing the prevailing attitude about AIDS, gender and reproductive health in southern Africa and Living with disorders of sex development
Photo by trollhare

CDC, Complementary Medicine, Medicine and Society, NIH, Podcasts

Podcast explores Americans’ use of complementary medicine

Podcast explores Americans' use of complementary medicine

5007651053_935ec0fd58_zDo you do yoga, take probiotics, see a chiropractor, or follow a special diet? If so, you’re not alone; roughly 34 percent of Americans make use of complementary therapies, and these are among the most popular ways to do so.

You may have read about the CDC report (.pdf) that came out last month and showed the prevalence of complementary medical approaches among American adults. For more, check out this podcast from The Lancet, during which Josephine Briggs, MD, director of the National Center for Complementary and Integrative Health (NCCIH), and Richard Nahin, PhD, MPH, NCCIH’s lead epidemiologist, discuss the major findings of the report and some of the potential implications for public policy.

Previously: Study shows complementary medicine use high among children with chronic health conditions, More hospitals offering complementary medicine, Older adults increasingly turning to complementary medicine and Americans’ use of complementary medicine on the rise
Photo by lyn tally

Events, Medicine and Society, Patient Care, Stanford News

Author-physician Atul Gawande on dying and end-of-life care

Author-physician Atul Gawande on dying and end-of-life care

Dr Atul Gawande, MD, MPH, Professor, Department of Health Policy and Management Harvard School of Public Health Harvard Medical School, gives a lecture ?Being Mortal: Medicine and What Matters in the End? on Monday, March 2, 2015, at Cynthia and Alexander Tseng, Jr., MD, Memorial Lectureship at Berg Hall Li Ka Shing Learning and Knowledge Center at Stanford School of Medicine . ( Norbert von der Groeben/ Stanford School of Medicine )When Atul Gawande, MD, MPH, witnessed the untimely and inevitable passing of patients, friends and his father, the shortcomings of our medical system’s approach to dying were revealed to him. As the noted author and surgeon told an overflow crowd at Stanford’s medical school earlier this week, he became inspired to “pick up my journalist’s pen” and explore questions about life and mortality that his elite medical education hadn’t equipped him to remedy.

Headlining the eighth annual Cynthia and Alexander Tseng, Jr., MD, Memorial Lecture, the former Stanford undergrad introduced his talk on end-of-life issues with the observation that begins his New York Times #1 book, Being Mortal: “I learned about a lot of things in medical school, but mortality wasn’t one of them.”

In a highly personal, and at times moving, talk, Gawande went on to discuss how decades of modern medical advances have changed our attitudes about dying and death. As fewer diseases and injuries pose life-threatening risks due to vastly improved medications and therapies, people simply expect to live longer. Well-being has become synonymous with longer and more robust life, supported at every stage by effective medical interventions, including a growing market of “lifestyle” rather than life-saving treatments.

Gawande argued that while health and medicine advances are of course positive, one consequence is that we have “medicalized our mortality” to the point where even terminally ill patients and their families look to their doctors for life-saving answers.

“Well, I didn’t [have the answers],” Gawande said.

Gawande said that medicine’s typical approach is to trade time and quality of life in the short term for longer life in the future, but the trade-off isn’t always a good one. For example, aggressive cancer treatment can be debilitating and painful, and often fails to prolong life, merely making the end of life miserable for patients.

In contrast, the goal of palliative care is to create the best possible day for patients today, regardless of what it means for the future. Studies show that for terminally ill patients palliative care improves quality of life, including people’s sense of control and empowerment over their lives. While these positive attitudes may be expected, palliative care practices reduce unwanted medical procedures (as well as costs) and have been shown to actually increase life span – by 25 percent in one study of late-stage lung cancer patients.

“If palliative doctors were a drug, the FDA would approve them,” Gawande told the audience.

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Medical Education, Medical Schools, Medicine and Society, Stanford News

Engaging with art to improve clinical skills

Engaging with art to improve clinical skills

med students looking at paintingThe scene: A group of medical students huddled around the iconic Robert Frank photograph Car Accident – U.S. 66, Between Winslow and Flagstaff, Arizona in the Cantor Center for the Visual Arts. They’re being led through an observation exercise by Sarah Naftalis, a doctoral student in art and art history at Stanford, as part of an innovative new medical school course supported by the Bioethics and Medical Humanities Scholarly Concentration.

Naftalis asks students what they see as she gestures to the photograph, which appears to have as its focal point four people standing out in a field, looking at something under a blanket on the ground. Several students note the people, the odd lumpiness of the blanket and the reduced horizon. Second year medical student Sam Cartmell says, “Well there may be more than four people,” and points to an odd contour at the shoulder of the lone female in the photograph. Cartmell’s observation sparks a lively debate, as his fellow students take turns looking closely at the work, seeking to discern what Cartmell has seen.

The concept behind this class is so important. If medical students can grasp these observation skills, it will really serve them well in their residencies and beyond.

That moment, explains Naftalis, illustrates the “productive ambiguities of art,” as well as the benefit of engaged close looking without “rushing to assign meaning to what we see.”

The practice of engaged close looking as a means to improve observational skills is a key goal of the course, which includes gallery sessions facilitated by doctoral students from the Department of Art and Art History at Stanford paired with a clinical correlate hour where School of Medicine faculty members applied the lessons of the art gallery portion to the clinical setting. Physicians from family medicine, orthopedics, dermatology, pathology and anesthesiology led discussions on a range of topics including narrative, body in motion, skin and tone, and death.

“The thematic organization was meant to inspire conversation across disciplines, by putting two takes on a similar theme in proximity to each other for two hours,” explains art history doctoral student Yinshi Lerman-Tan, who helped develop the course. “Bringing medicine into the space of the museum was a great aspect of the course – simply allowing different bodies of knowledge to exist under one roof. The medical students would sometimes use clinical vocabulary or concepts to describe works in the gallery, making for an interesting range of language in our discussions.”

Cartmell said one important take away for him from the course, which is called “The Art of Observation: Enhancing Clinical Skills Through Visual Analysis,” was learning to observe without jumping to interpretation. “I was surprised at how strong the impulse was to interpret the work, before I had actually observed the entire piece,” he says. The exercises the instructors led us through, describing what we saw objectively without commentary, really forced me to slow down and really see what was in front of me, without jumping to conclusions or interpretation.”

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Emergency Medicine, Medicine and Society, Patient Care, Public Safety, Stanford News

A young child, a falling cabinet, and a Life Flight rescue

A young child, a falling cabinet, and a Life Flight rescue

ticktockLife in the air rescue business is highly unpredictable. You can spend many hours idling away the time in an obscure, basement office. But when an emergency call comes, you literally don’t have a second to grab a pen on the way out the door.

So it was on one November day, when I did a ride-along with Stanford’s illustrious Life Flight air ambulance service, the oldest in California. The team graciously agreed to let me accompany them on a flight for a story for Stanford Medicine magazine, whose current issue is focused on the role of time in medicine. Life Flight, I figured, would give me a sense of the split-second timing that can sometimes make a difference between life and death in an emergency situation. I was scheduled to fly with the crew in late October, but instead I spent that day learning about the service in what proved to be a leisurely day with no calls.

On my second ride-along day, it appeared that history was about to repeat itself when, just as my shift was about to end, the emergency call came in at 3:39 p.m. I became an eye witness to the rescue of a toddler who suffered a serious head injury when a heavy, ill-secured cabinet at her preschool crashed down on her head during naptime. The story was so dramatic that it made the local news. The school was shut down several days later by local officials because of code violations.

Things could have gone poorly for little Aeshna, the 3-year-old victim of the accident, who was left dazed, not fully conscious and vomiting as a result of her injury – clear signs of head trauma. She could have suffered significant bleeding in the brain and permanent brain damage – a prospect that was a major concern for her parents and caregivers.

The two Life Flight nurses, who have a breathtaking array of skills, and their veteran U.S. Navy pilot made it to the scene at the Fremont, Ca. preschool across the bay within 23 minutes of the call and were able to bring Aeshna back to Stanford for quick assessment and treatment.

You can read the minute-by-minute scenario of Aeshna’s rescue in the the magazine, which came out last week.

Previously: Stanford Medicine magazine reports on time’s intersection with health, Comparing the cost-effectiveness of helicopter transport and ambulances for trauma victims, Stanford Life Flight celebrates 30 years and Ask Stanford Med: Answers to your questions about wildnerness medicine
Illustration by Lincoln Agnew

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