Organ donation goes social on Facebook’s new timeline feature

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Many people don’t sign up to be organ donors because they don’t know what it involves. That was the case for Alec Rampton, who said he didn’t sign up to be a donor until some of his friends harassed him about his decision. It wasn’t until years later, as an adult, he realized its power.

Four years ago Rampton was diagnosed with Primary Sclerosing Cholangitis, a disease that causes liver failure. Although he received treatment, he took a turn for the worse within a year and was moved to the top of the transplant list.

Rampton, who used to joke about needing health insurance because he was in such good health, experienced a “daily degeneration.” His skin and eyes turned yellow as jaundice set in. He lost weight because he couldn’t eat without vomiting. And then he started to lose his memory because of the built-up toxins in his body.

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Alec Rampton with his wife before his transplant. His disease turned his skin and eyes yellow.
“That’s when it hit me that this was really serious,” Rampton said. “I was scared. It was like we lived in a constant prayer.”

Just when he thought he couldn’t hang on any longer, the call came for Rampton’s transplant.

Each day, an average of 18 people die waiting for a heart, liver or lung transplant. Although many organ donor registries encourage people to sign up when they renew their driver’s licenses, only 43 percent do. Recently, Facebook has changed that number dramatically.

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Alec ran in a Salt Lake City Marathon with his wife Megan.

Individuals can now share their organ donor status on their timelines, prompting many of the 800 million users to encourage their friends do to the same. The new timeline feature has links to organ donor registries throughout the United States.

Rampton said he was relieved to hear Facebook’s announcement.

“This is exactly what we need,” he said. “It’s such a simple thing that can promote something so important, something that can change lives.”

With the support of his wife, friends and ward family, Rampton made a full recovery. In fact, he started setting goals while still in the hospital.

“It’s like you have a second lease on life,” he said. “The things you thought mattered before don’t matter anymore.”

Just under one year later, he ran with his wife in a Salt Lake City marathon. Rampton, who said he never used to cry before getting sick, choked up while remembering what it was like to look back on the other participants running towards the finish line.

“It was the most amazing thing to see where I was and where I am now,” he said. “I thought this was a great way to dedicate all that I had been through to my donor, his family and my family.”

Within the first day of the announcement, Facebook reported six thousand people had registered to become an organ donor throughout 22 states. More than 100 thousand members shared their organ donor status within 48 hours, according to an online Bloomberg report.

Utah’s donor registry also saw a big increase in organ donors since the announcement. Dixie Madsen, public education coordinator for Intermountain Donor Services, said an average of eight people a day sign up to become an organ donor in Utah. In the week following Facebook’s announcement, 455 people signed up.

“People are going, ‘oh yeah, I do need to look into this,'” Madsen said.

Madsen said visitors to  Intermountain Donor Services’ website has also increased since the announcement, helping people to become informed of organ donation. She sees this as a long-term trend that will increase awareness and interest.

“It has given people an opportunity to talk about it,” Madsen said.

Lisa Osmond knows first-hand the power of talking about organ donation. Her oldest son was “always looking out for the underdog,” and it wasn’t surprising when the high school sophomore came home and announced he had signed up to be an organ donor. Little did she know that within two weeks, that would become a reality.

Osmond said Adam came home from a class not feeling well. Quickly losing consciousness, Adam was taken by Life Flight from St. George to Salt Lake City. Hours later, he was declared brain dead. She said knowing Adam’s wishes made it possible for her to gain peace out of the tragedy.

“It gave me a mission, gave me a reason, something to hope for,” she said.

Osmond, who now lives in Orem with the rest of her family, became a volunteer for Intermountain Donor Services. She travels throughout Utah educating junior high and high school children about organ donation and the impact it has.

“I just want to shout it out from the rooftops,” she said. “And as long as I can, I’m going to.”

Osmond said she was thrilled to hear the announcement and posted her organ donor status on her timeline that day. The first person to “like” her status update was Steve Bird, the man who received Adam’s liver.

“We can work for years and do the best we can,” Osmond said, “but social networking can reach so many people in just one day. When we get exposure like that, it can only go up from here.”

[media-credit name=”Alec Rampton” align=”alignright” width=”300″][/media-credit]
Lisa Osmond with Steve Bird and his wife. Steve received her son Adam's liver.

Many organ donation decisions, like Rampton’s and Osmond’s, are a result of discussions with family and friends about beliefs and where they stand on the issue. For several, peer pressure leads them to get informed so they can make a decision as well.

Travis Olsen, a senior from Alpine studying public health, said Facebook’s new addition will help many overcome the barrier of signing up as an organ donor by involving friends and making it easy to do.

Last year alone, BYU students logged 121,957 hours of service. According to Y-Serve, 22,184 volunteers provided service in a variety of fields. However, many students are not aware of Facebook’s announcement, allowing them to provide a valuable service in a matter of minutes.

“Social media is an integral part of public health,” Olsen said. “Encouraging each other can help someone who needs organ transplants.”

People just like Alec Rampton.

“I used to think that it was only Oprah who could tell people to do something and so many would do it,” Ramptom said. “Now, it’s Facebook.”

To sign up as an organ donor on Facebook, click on the “Life Event” button on the profile page. Under “Health and Wellness” select “organ donation.” The feature also allows users to add a personal story to the update.

 

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