Social Media and Medicine

Changing the way those suffering from disease find help, community.

July 23, 2010, 3:41 PM

July 23, 2010— -- When Carlos Sanchez's doctor told him that he needed a new kidney, Sanchez went online.

"I said the only way I can talk to my, all my friends, is through Facebook," he said.

In August 2009, Sanchez was on dialysis and desperately needed a kidney. The East Haven, Conn., man updated his status on Facebook, asking his friends if they might be potential donors.

Minutes later, he got a response from a Facebook friend he barely knew, the mayor of the town where he lives.

Sanchez was so shocked, at first he didn't respond to Mayor April Capone Almon.

"I was like: the mayor of East Haven offering me a kidney?" Sanchez said.

Almon felt compelled to help Sanchez.

"I knew him well enough to know he was a nice person and a good person," Almon said. "I just felt like he needed and I could help him."

People like Sanchez, who are suffering from diseases, can use social media to connect and share information and support.

A glimpse at the Facebook page for those suffering from ALS, commonly called Lou Gehrig's Disease, shows more than 9,000 people from the ALS community supporting the page. One man posted a bike ride that he's organizing.

Another Facebooker used the page to grieve.

"Just lost a good friend on Saturday to this horrible disease," he posted.

Social networking sites like Facebook allow those fighting diseases and their supporters to organize fundraising drives for research and treatment.

Dan Darcy raised more than $180,000 for blood cancers in just 10 weeks on Facebook.

Medical Misinformation on Social Networking Sites

While social networking sites have revolutionized fundraising and the creation of communities for those with diseases and their supporters, there is a downside. Increasingly, doctors are diving into the same social networks to correct medical misinformation.

Dr. Howard Luks from Westchester Medical Center tweets, blogs and posts on Facebook in between surgeries.

"When I first adopted Twitter, it became very apparent that a lot of the information that patients were talking about online and the information that they found online was sometimes incorrect, sometimes even dangerous," Luks said.

Even with the sometimes inaccurate medical information, people mostly feel social media has been a force for good -- as demonstrated by its role in locating Ross Abinanti, who has Alzheimer's Disease.

On June 30, 2009, Abinanti wandered away from his family on a Campbell, Calif., street. Within seconds, he had vanished, his family's worst nightmare come true.

Along with the missing person posters put up throughout the California town, family members and friends of Abinanti formed a Twitter page, Help Find Ross, and a Facebook page, Ross Abinanti Updates.

Facebook provided an around-the-clock, all-points bulletin for the community.

Ten days after he went missing, Abinanti was found. Abinanti's son-in-law expressed his relief in a video posted on the Facebook page.

"Today is the day that Ross was found," Abinanti's son-in-law said. "I want to talk to you guys, the 1,700 people who have signed onto Facebook and have prayed every day, and who have sent out those e-mails and messages and flyers."

Back in East Haven, Conn., Sanchez, the man who found an unlikely kidney donor through Facebook, had his surgery in April. Both he and the town mayor who donated the kidney have recovered and feeling great.

"It's amazing," Sanchez said, "and I thank Facebook for this," Sanchez said.

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