AKF Ambassadors educate and inspire people to fight kidney disease through social media

Social media is one of the many tools people rely on to get information, educate others, become advocates and inspire their friends, family and community throughout their kidney disease journey. We recently spoke with two of our AKF Ambassadors about how they use social media and what advice they have for others.

Jim M. – Hammond, Indiana

“I wasn’t big into social media when I first set up my Facebook and Twitter accounts,” Jim explains. He received a kidney transplant in 2016, but he always brought his laptop along when he was going to his dialysis appointments three times per week. From the dialysis chair, he soon began to regularly post a mix of motivational and kidney disease posts on Facebook and Twitter.

“In my mind, it’s the best way to reach people—not just other kidney disease patients but everyone,” Jim says. “It’s good for raising awareness of kidney disease, testing and early detection, treatments, options for dialysis and preemptive transplants. People already living with kidney transplants can discuss things like medications, how frequently we see our doctors, go in for blood draws, change medications, change brands of medication and more. There’s lot of information out there.”

While Jim is especially active on Twitter, he is also a big fan of Facebook groups. As an AKF Ambassador, he was able to join our closed group for Ambassadors to learn more about our advocacy efforts and connect with our other Ambassadors. He’s a very active member of the group and shares a lot of the work he does for the kidney community with us and other members. He joined a few other groups for kidney patients as well, which he found to be valuable venues for people to share stories and information. One by one, he has started many additional groups on his own and has become so well-known for his social media savvy that other patients come to him for guidance. 

“Generally the advice I give is to open an account on Facebook, Twitter and/or Instagram, then invite your friends and family to connect with you. If you’re interested in starting a Facebook group, you can populate it with people you know to get a small following at first. Start the group off by posting to it frequently, then publicize it to others outside your direct network,” Jim adds. “Get your cause out there and let people know what it means to you and why you’re involved with it. Don’t be afraid to go to the admins of other groups you belong to and ask them if they will allow you to post about your new group in theirs. This will get you more information and will allow you to meet more people.”

Leigh-Ann W. – New Orleans

Leigh-Ann lives with her mother and sister, who both help administer her at-home dialysis. She uses Twitter to provide a behind-the-scenes look at what life is like for someone who dialyzes at home with family.

“I like to post about the convenience of home dialysis, as well as the struggles of living with kidney failure. I’m upbeat for the most part but there are those days when it is not so easy. I try to balance the good side with the challenges,” Leigh-Ann says.

She makes it clear on social media that deciding to do at-home dialysis affects not only the patient, but their caregivers as well. Since her mother and sister both work full-time, Leigh-Ann’s dialysis schedule has to work around their schedules.

Leigh-Ann knows well that kidney failure can be an invisible disease, so she uses social media to make herself visible and educate others. “Being younger and on dialysis, there are people who didn’t even know that I have kidney failure until I started sharing my story. Once you start sharing, you become an inspiration to others. Everyone has challenges in their lives, but a lot of people don’t know about dialysis and the challenges that come along with it,” she says. “It is really taxing on the body, and since I’m an active member of my community, it adds another layer. I’m active in church, my sorority and college alumni association.”

Leigh-Ann has received feedback about how inspiring it is to see her living a very full life while being on dialysis. She also has lupus and aspires to continue using social media to show that life does not end, despite having chronic illnesses.

If you’re new to social media and don’t use it that often, or you don’t regularly use it to talk about kidney disease, a great place to get started is by following the American Kidney Fund on Facebook, Twitter, Instagram and LinkedIn! Commenting on our posts will allow you to interact with others who are also commenting, and sharing or retweeting our posts to your own page can be a way to start talking about kidney disease with your existing audience of friends and family.

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About the Author(s)

Ben Shlesinger

Ben Shlesinger is associate director of government relations at the American Kidney Fund.

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