News + Insights from Around the Web + The Patient's Playbook Bottom Line.
The Incredible, True Story of a Patient Who Diagnosed Her Own Genetic Mutation
"A few days later, I got a package from Jill... It included a stack of family photos; a detailed medical history; scientific papers; and a 19-page, illustrated and bound packet... It seemed absolutely crazy. The idea that an Iowa housewife, equipped with the cutting-edge medical tool known as Google Images, would make a medical discovery."
—Jill Viles had a theory about her withered muscles—but she needed the author's help. Her discovery ultimately linked her to a muscle-bound Olympic athlete with the same genetic mutation. (The Atlantic)
Bottom Line: Scientists around the world are working furiously to develop new ways to use genetic information to help prevent, detect, and treat a host of diseases. But until the day comes when everyone carries their DNA profile on a flash drive, a throughly charted family health history can often be the best source of information about what may be lying in wait for you. Have you written down your family health history and collected your medical data? If not, our Helpful Tools section can get you started.
Zika virus is Here: What Can You DO to Protect Your Family?
—The World Health Organization says spread of the virus is imminent; and the CDC has issued new guidelines for testing infants. (Washington Post)
Bottom Line: Brazilian officials believe that the Zika virus has caused thousands of infants to be born with brain damage. So far, only a dozen or so cases of the virus have been identified in the U.S., and all involve people who were bitten abroad. But spread of the virus, for which there is no vaccine or medication to treat it, seems imminent. Here's how pregnant women can protect themselves: Avoid travel to areas with an active infestation; if you must travel to a vulnerable area, take precautions to avoid mosquito bites; be aware of the virus's symptoms; and visit the CDC's resource page for pregnant woman for the latest updates.
9 Yummy Foods You Can Snack on Without Feeling Guilty
Surprise! Chocolate is a go, but with some caveats: “We’re talking an ounce here, which is a square, not a whole bar.... And the chocolate should be 70% to 72% or more cacao to get the antioxidants.” (Next Avenue)
Bottom Line: Think of food as fuel. Snacking is really just a way to keep your energy up between meals. As this story notes, the ideal snack is 1. A combination of protein, healthy carbs and good fats; 2. No more than 100 to 200 calories; 3. Doesn't consist of processed foods or empty calories such as cookies, chips, pastries, or muffins.
New Study: Colorectal Screenings at Age 40? Yes, and Here's Why.
Bottom Line: Colorectal screening (usually done through analysis of stool samples or barium enemas or colonoscopy) typically begins at age 50. And while there's great debate over screening guidelines, this study of 40,000 colorectal cancer patients, whose average age at diagnosis was 42, makes a strong argument for earlier screening. Researchers found that in 65% of the younger patients, their colon cancer had spread by the time of diagnosis. That had happened with fewer than 58% of the older patients. If you have symptoms that are causing you concern, you should absolutely tell your doctor. And if you feel your doctor is dismissive of your concerns, it's time to get an expert opinion ASAP.
The Big Secret Researchers Keep— and why you should care
"Many times in my career as a heart disease researcher, I respectfully requested access to clinical trial data held by others. The response was no—regardless of the merit of the request—and most often from other academics. It is a behavior that would be hard to imagine in other fields, like physics or astronomy."
—Dr. Harlan Krumholz writes a powerful argument for why researchers should share data. (NPR)
Bottom Line: Currently, as the author notes, medical scientists can publish their findings without ever making available the data upon which their conclusions were based. But a recent, game-changing proposal by the editors of the leading medical journals would make the public sharing of clinical trial data a condition of publication. This new transparency could help not only other researchers, but also doctors and patients. As a patient, if you participated in a clinical trial, wouldn't you want to know the results? The proposal is currently open for public comment.
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