Joni Reece was 15 when she was diagnosed with psoriasis. Today, the New York-based woman uses social media to help others cope with psoriasis by offering tips and inspirational quotes on her blog, justagirlwithspots.com.
"Psoriasis can be hard. Sometimes it's nice to get a little bit of positivity," she said.
Reece also has picked up tips from others through social media. Her readers suggested she use goat's milk soap and drink apple cider vinegar a few times a day. These may not be vetted by science or doctors, but they are working for her.
Reece has made friends through her involvement in the psoriasis community via social media, and the connections have meant a lot to her. She has numerous Twitter followers at @girlwithspots. "It really makes me feel better that there's someone else out there who is going through exactly what I am," she said.
Others with psoriasis also are turning to social media for information and tips, and to connect with others with the condition.
National Psoriasis Foundation partnered with Inspire, a company in Princeton, New Jersey, to create our online support community TalkPsoriasis.org. According to Inspire CEO Brian Loew, TalkPsoriasis is one of the most active of the various patient discussion boards it helps support.
"It's super active," he said, noting that it has grown to more 80,000 members since it was established in 2011.
Comments and discussions run the gamut, from dating with psoriasis and parenting children with psoriasis to dealing with stares and building UV light boxes.
Part of the reason for the strong interest in psoriasis on social media is the nature of the skin condition, Loew said.
"It can be uncomfortable and intense," he said, "and people who have psoriasis feel that, through involvement and education, they can improve their health state."
That's what brought Matthew Kiselica to NPF. He went online to learn more about the illness and credits the information he got from others with psoriasis as the most helpful. There, he learned about the latest treatments—biologics now keep his psoriasis under control—and how others cope.
"By the time I started using the message boards, I was distraught because I didn't know what I was going to do to control my disease," Kiselica said. "The knowledge I learned about the new treatments and seeing I wasn't alone, it gave me hope."
Social networking was so beneficial that Kiselica writes about his experiences with psoriasis and psoriatic arthritis on his Facebook page and tweets (@npfMatt) if he comes across an article or research that he thinks would interest others.
"I want to rope in other people because social media has helped me so much," Kiselica said.
When doctors just won't do
To ensure that the discussions are safe and respectful, TalkPsoriasis is closely monitored by moderators, who make sure that people can take part without worrying about jeopardizing their privacy.
Information about psoriasis that comes from patients is often different from doctor-generated information, but it's not necessarily better or worse, Loew said.
"Patients aren't trying to play the role of doctors," he said. "And there are many questions that are better addressed by the patients themselves."
Online discussions can be grouped into three areas: emotional, practical and scientific.
"I think most of the doctor information falls into the third area," Loew said. "The first two—emotional and practical—are super important to most people, and people who live with psoriasis every day sometimes can address them best."
People of all ages are active on TalkPsoriasis and other social media when it comes to psoriasis. But the majority are women; TalkPsoriasis participants are about 63 percent female. That's not surprising, given that women often play the role of chief medical officer of their homes, Loew said.
Virtual community of friends
Amy Whelan, 44, an accountant from Palm Springs, California, shares her experiences on Facebook, hoping they serve as inspiration to others with psoriasis. For example, she once wrote about going for a pedicure and her encounter with a woman who was afraid to touch her feet because of her plaques. Whelan wrote that she explained that it was psoriasis and that it wasn't contagious, and her readers commended Whelan on her handling of the situation.
And Vickie Wilkerson, 42, of Blanchard, Louisiana, uses social media on days she's feeling down about her condition. Wilkerson has had psoriasis for seven years and was diagnosed with psoriatic arthritis in November. She also lends support to others.
"I tell them, 'Don't give up the fight. You've got to keep pushing forward. People are going to come to accept you and your psoriasis, or they're not.'"