Psoriatic diseases brought them together; together they are changing lives
Matthew Kiselica is, by his own account, a pretty upbeat, outgoing kind of guy. For years, his method of coping with psoriasis was simple: Ignore it, and hope it ignores you back. That worked for about 20 years until one day, his psoriasis no longer wanted to cooperate.
He developed psoriatic arthritis that forced him to use a cane when walking. He endured several erythrodermic flares that rendered him seriously ill. Kiselica could no longer deny he was in dire need of help. So he got on the Internet and cautiously reached out on the National Psoriasis Foundation (NPF) online community.
Kimberly Schenk was barely a teenager when she reached the breaking point with her psoriasis. She was 75 percent covered in plaques at age 14 and "begging to find someone who understood." She got involved in the NPF online community and received a scholarship to help offset the costs of flying her and her mother from Canada to an NPF conference in San Diego.
"That conference was a HUGE turning point in my battle," Schenk said in an interview via email. "Meeting people that I had talked to on the boards for so long provided me the realization that not only was I not alone, but these people truly cared."
Schenk and Kiselica are just two members of a group that has, over time, evolved into the Walk to Cure Psoriasis team called Cross Country Aches and Pflakes. They come from many stages of life and locations—single, married, young, middle-aged, East Coast, West Coast and abroad—but they all share a common disease. For Kiselica, Schenk and several other members of the group, the Cross Country Aches and Pflakes team has led to life-changing relationships.
To P.J. Leary, there's nothing unusual about people at different ages, locations and walks of life connecting over a common disease. Even more, it's important for young people to make those connections and become involved in advocacy. "If we do not support the young people who are struggling with this now, we will have no leaders," P.J. said.
Deirdre was only 12 when she accompanied her mom, P.J., to a Capitol Hill Day in San Diego in 2006. There, she met Kiselica, whom she credits with bringing her out of her shell.
"He's really funny and gets along really well with kids," Deirdre said. "He's always kind of been there for me."
Deirdre has had psoriasis since before her first birthday, but she initially got involved with the team to support her mom, who has severe psoriasis and psoriatic arthritis. Seeing other people, especially older members of the team, really brought home what it means to have an incurable disease, she said.
"At first, it really scared me," she said. "I guess when you are younger, you don't realize what 'chronic' means."
Then, two years ago, at age 17, Deirdre was diagnosed with psoriatic arthritis, too. She relied on the team for support, particularly the adults, who guided her through the physical and emotional struggles of the disease. Matthew compares the group to a military unit that has been through highs and lows together. He remembers the first time he met Deirdre, whom he calls "Dee," as well.
"I've known her for about a decade, seen her grow from a young teenager to a lovely young woman," he said. "She's like a daughter to me and to my mother, as well. We've kind of helped her with her psoriasis a bit, and she's not the only one like that. Our whole group of friends are kind of considered part of the family."
As two of the youngest members of the group, Deirdre and Schenk struck up a friendship that has persevered despite the distance. They talked via online chats, had the occasional phone conversations when their parents would allow and now use Facebook and text messages to stay in touch. Their conversations have gone far beyond psoriasis to jobs, boyfriends, high school, puberty and then adulthood.
"Most people would find it hard to understand that I consider Dee one of my closest friends even though we live 4,150 kilometers apart and have actually only met four times," Schenk said. "But to me, it makes sense. We share a deep bond. We were brought together by a terrible condition, but we are kept together by our genuine love for each other."
In the meantime, P.J. Leary has provided an incredible amount of support to Schenk, a fact that her daughter sometimes has struggled to negotiate. "We had a very different view of my mom; she has a very different role for each of us," Deirdre said.
In the end, though, Deirdre thinks the unique relationship she, her mom and Schenk share is pretty cool.
Matthew Kiselica doesn't ignore his disease anymore. After all, if it weren't for psoriasis, he never would have met his wife, Cat.
The two knew of each other from the Foundation message board, but never met in person until the Foundation held a conference in Boston in 2005. Cat was recently divorced and was still grappling with her psoriasis and psoriatic arthritis diagnosis, but she was struck by Matthew, who was wearing his signature color of pink, and had become the unofficial leader of the group of 20-some people. He rounded up the group, got cabs for those using walkers or canes and scouted out restaurants that could accommodate the entourage. When a member of the group became reticent about heading out in public, Matthew gave that person the extra push to go out anyway.
"He's worn his psoriasis like a badge of courage," Cat said. "He's out there and just doesn't care … He's not the guy who wears a turtleneck."
The two developed a friendship that turned romantic in about six months. Two-and-a-half years later, they were married.
"I love living with Cat," Matthew said. "She's truly my soul mate."
The group started a tradition of meeting up every year at a walk. In 2010, many of the members of the Aches and Pflakes team met in Chicago. Cat brought her son, Larry. Matthew and Cat also brought honorary daughter Deirdre Leary. It wasn't long until Deirdre and Larry struck up a connection, too. They've been dating for a year now. Larry hasn't been diagnosed with psoriasis, but his understanding of the disease—and of the network his mother, stepfather and now, girlfriend, are a part of—has been key to their relationship, Deirdre said.
"I didn't have to explain, at my age, why I go across the country to spend time with people as old as my parents," she said. "He understands everything that it is to me and to his family."
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