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How social media helps us study rare diseases

When a team of cardiologists wanted to better understand an extremely rare heart condition called spontaneous coronary artery dissection (SCAD), they reached out to possible participants on patient-run social-media sites dedicated to women's heart health.

It was something of a shot in the dark, but Mayo Clinic cardiologist Sharonne Hayes says that in doing so, her team stumbled on a novel way to recruit participants who are notoriously hard to track down.

"This is a completely different research model than Mayo Clinic is used to," said Hayes, whose findings appear in Mayo Clinic Proceedings. "Investigators here typically rely on the stores of patient information from the clinic. This was truly patient-initiated research."… Read more

Woman attempts to avoid her image for a year

After spending a relatively stressful weekend in St. Louis trying to find the perfect wedding dress, UCLA sociology Ph.D. candidate Kjerstin Gruys decided on the flight back to L.A.--which could arguably be dubbed the city of mirrors--that it was time for something drastic: a year without them.

This was back in March, and her "mirror, mirror...OFF the wall" project would include the six months leading up to (and the six months following) her October wedding.

So far so good, according to Gruys' near-daily blog posts. But as someone with only a tiny bathroom mirror … Read more

Social network focuses on shared cancer stories

If your life or that of a loved one has been touched by cancer, here's a new social network where you can share your experiences and offer mutual support.

I Had Cancer recently launched to connect current and former cancer patients, as well as their supporters.

Users can build profiles, create circles of friends, contribute to discussions, and send cancer itself a message via the "Dear Cancer" tab.

If they want to find someone who has gone through similar circumstances, they can also find users by location, gender, age, type of cancer, and treatment.

Founder Mailet LopezRead more

Facebook makes it easier to announce pregnancy

Since 2010, Facebook users have been able to list family members on their profiles. In February, the social-networking site added "in a civil union" or "in a domestic partnership" to its relationship status line.

Now, Facebook lets people announce that they are expecting through a status update that includes anticipated date of birth and name(s). (Being a twin, I am compelled to point out that some will be entering multiple babies/names.)

An obvious debate quickly ensued, and will likely rage for a good week or two before everyone forgets that there once was a time when such an option was unavailable.

Among the currently trending questions: Is this just another way for Facebook to add to its data pool? Is it at all appropriate to announce pregnancy (or adoption) online? Does this simply serve our growing ability to self-aggrandize? Et cetera.

Immediately after Facebook launched the feature, it was discovered that a technical glitch enabled pranksters to enter their Facebook friends' names as the expected children, but that has since been fixed.

Related stories • How to follow Facebook pages anonymously • Control who can view your Facebook photos • How to move your Facebook photos to Google+

Of course, the beauty of the system is that the user gets to decide whether to take advantage of the new status option. If you like it, use it. If you don't, then don't. And people can still let everyone know in their preferred way first, before releasing the news in one fell swoop via Facebook.… Read more

CPR site lets you choose and touch chests, guilt-free

OK, I'll come out and admit the blushingly obvious: the above screenshot reveals which chest I chose. But I shouldn't feel guilty, right? I've just learned how to give hands-only CPR!

The American Heart Association's "Hands-Only CPR" campaign is officially in full-force. After issuing new guidelines in October 2010 that, in adults, rapid chest compressions without rescue breathing is the way to go, it threw a lot of weight behind its hands-only campaign, which boasts press releases, catchy YouTube videos, an app, and so on.

According to the new guidelines, a bystander should compress … Read more

Researchers mine tweets in search of health trends

The explosion of social media has given researchers a lot of data to mine and trends to identify, but two computer scientists at Johns Hopkins University say they've developed sophisticated filtering software that is attracting particular attention from public health officials.

Twitter, which launched five years ago, has already been used by computer scientists to try to track the flu.

But when Johns Hopkins University computer scientists Mark Dredze and Michael Paul devised a method to filter and categorize health-related tweets, they weren't sure what they might find. So they decided to sort the tweets (they filtered 1.… Read more

Researchers sequence cancer-resistant rodent's DNA

You wouldn't know it by looking at it, but the naked mole-rat has a few things to teach the animal world. It has fascinated researchers since it was discovered a few years ago that the rodents can live for 30 years, compared to the mouse's average life span of four.

So after launching an online database that details the lives and histories of more than 4,000 animal species, a consortium of researchers from around the world set out to sequence the genome of the naked mole-rate--which is native to the deserts of East Africa.

With the help … Read more

Simplee simplifies managing health care costs (podcast)

Even if you have insurance to cover the cost of your health care, understanding and managing it can still be a nightmare. You go the the doctor or get a procedure or lab test and typically have no idea what it will cost. A bill arrives, but you still don't often know how much you owe and how much the insurance company will pay. Eventually the insurance company mails you an "explanation of benefits," but even that can sometimes be indecipherable.

Enter Simplee, a free online personal health care expense management system. Like a Mint.com for … Read more

Facebook blocks pics of breast cancer survivor

Facebook and boobs. The parties just can't seem to get along. Be it what kinds of pictures to allow (photos of breastfeeding and mastectomies, for instance) or what kinds of campaigns to host (even breast cancer campaigns such as I like it on have been frowned upon by other breast cancer awareness campaigns), the social network can't seem to steer clear of breastly woes.

Now the removal of U.K. Facebook user Melissa Tullett's recent double mastectomy image is raising more than a few eyebrows.

The question at hand is the exact nature of Facebook's nudity … Read more

It's a jungle (gym) out there for fitness network

There's a big question being explored right now about the intersection of health and social media: Does the tracking and sharing of personal fitness and diet data motivate us to get, and stay, healthy?

A host of Web sites and mobile apps are banking on the answer being yes. FitDay provides a free diet journal; Daily Burn offers logs to track diet, exercise, and weight; an Awareness app promises to upgrade one's mental software; and dozens of other sites and apps cater to specific types of diets, exercises, and desired outcomes.

So the just-launched Humana fit social network, designed to help users live healthier, more active lives, is going to have to offer some pretty stellar features to stand out.… Read more