Coping tips from people who have been there
Tom "E.Z." Goen
Tom "E.Z." Goen found rock bottom on the floor of his apartment in Belvidere, Ill., in 2007. As he lay there following his third suicide attempt, a man came to him as a vision.
"Tom, it's not your time," the man said. "Go back." It was his father.
Just two years after Goen's psoriasis diagnosis, with no insurance or treatment, the disease raged an inch thick on his feet. He'd been forced to sell his business, a bar and grill he'd opened after losing his job as a sales executive, and his wife had left him.
"I was totally down and out," said Goen, who still chokes up at the memory.
Somehow, Goen got back up. Though a long road still lay before him, as his weight dwindled from 165 pounds down to just 127, Goen finally began getting the treatment he needed through a health care program in his home state of Iowa in 2009. Prescribed a biologic drug, Goen started taking his life back, and he soon became focused on a road of a different kind: The open road.
In 2010, just a few years after his darkest days, Goen mounted his Harley Ultra Classic for a three-month, 15,000-mile, 48-state tour of America to raise awareness about the disease. On his 49th birthday, the father of two rounded the bases of his hometown's Field of Dreams baseball diamond atop his motorcycle, his journey complete.
"I proved all the naysayers wrong," he said. "It wasn't only to prove to everyone else, it was to prove to me it could be done."
The following year, Goen did it again, this time taking seven months and adopting a new friend along the way — a fluffy Pomeranian- Lhasa Apso mix named Lil Buddy who's since logged more than 20,000 miles with him.
"My Lil Buddy is my antidepressant," Goen said.
Now 52, Goen has set his sights on Alaska, the only state he hasn't yet visited. As he tackles this last frontier — in spite of ongoing flares on his hands and feet and psoriatic arthritis pain in his back that makes walking difficult — Goen is a living example of the advice he offers people facing a new psoriasis diagnosis. "Hang in there," he said. "Don't do what I did and give up."
Deirdre Leary: Taking Charge
At an age when most kids are just mastering multiplication tables, Deirdre Leary was learning firsthand how serious psoriasis can be.
The summer after third grade, Leary's mother — who, like Leary's father, grandfather, sisters and Leary herself, has psoriasis — had a severe flare triggered by a strep infection. Light therapy that was supposed to help instead caused thirddegree burns, and the complications nearly killed her. Caring for her younger brother as she watched her mother suffer proved lifechanging for the then-10-year-old Leary.
"It was really frightening seeing my mom almost die," Leary said. "I want to make sure I do everything in my power to keep people from having to go through what my mom has gone through."
After that summer, Leary launched a campaign against psoriasis on her mother's behalf. At age 12, she traveled to Washington, D.C., with the National Psoriasis Foundation for her first Capitol Hill Day to raise awareness for the disease with Congress. She lobbied local politicians for psoriasis funding, and she encouraged other youth to get involved with NPF. Throughout high school, she volunteered five to 10 hours per week with the Foundation as an online mentor and forum monitor.
All the while, Leary's own psoriasis remained fairly mild. But in eighth grade, she started having difficulty running. Though the cause remained unclear for several years, at age 18, she was diagnosed with psoriatic arthritis, forcing her to give up soccer.
"It's really hard to lose those things," Leary said. "It's hard to cope with the fact that you're going to have this for the rest of your life, and you're only 18."
Leary had a ready-made support system, both within her family and from contacts she had made with the Foundation. But for others facing the same diagnosis who might not have that built-in network, her biggest recommendation is to get involved — with NPF, with local support groups, even with online message boards.
"When you have a hard day, it's those people who are going to be there for you," she said.
That's even how Leary met her boyfriend of two years, Larry Wright.
Now 21, Leary has taken charge of the disease once again — this time on her own behalf. She's learned to cope with her arthritis as a nursing student at the University of North Carolina Wilmington, and she stays healthy by swimming and taking medication and supplements.
"Everything I do now is important in making sure I don't lose control of my disease."
Junior Reynolds: Getting comfortable
As a 21-year-old student at The Ohio State University, what Junior Reynolds wanted was simple: To take off his shirt, paint his chest in scarlet and gray, and join the crazed football masses each Saturday in the fall. But with psoriasis covering his back and torso, the recent transfer from Virginia Tech felt too self-conscious to partake in what had been one of his favorite rites of college.
"You feel like you're in a box," Reynolds said. "You can't explain what you're going through."
Although patches of plaque psoriasis had appeared on Reynolds' skin sporadically throughout his childhood, none of the half-dozen doctors he visited had been able to diagnose it correctly. Only when he moved to Ohio, when the disease "went from part time to full time," did he learn that psoriasis was the culprit.
The timing of his onset, as a young person trying to adapt to a new school and meet new people, caused Reynolds to alienate himself from his surroundings.
"You're more self-conscious, and therefore, it really casts a longer shadow on your self image," he said.
Reynolds spent six months retreating further inward. Then, one day, he told himself, "I can make the best of this, or I can make the worst of this," he said.
He flipped open a three-ring binder and started writing, and he didn't stop until 15 pages were full. Over the next two months, he filled the entire notebook, titling the project "Weathering the Storm." In 2012, Reynolds published a book by the same name geared toward people overcoming all kinds of obstacles.
At age 27, Reynolds has now overcome many obstacles of his own. At-home light therapy keeps his psoriasis at bay, and he's learned not to let the disease box him in. For other young adults embarrassed about their psoriasis, Reynolds suggests being honest and maintaining a sense of humor about the disease when broaching the subject with new friends or love interests.
But above all, Reynolds stresses the necessity of keeping a positive attitude toward the disease.
"Don't let it overwhelm you," he said. "Don't be conquered; you go out and conquer it."
Driving Discovery, Creating Community
This year, we’re celebrating 50 years of driving efforts to cure psoriatic disease and improve the lives of those affected. See how far we’ve come with this timeline of NPF’s history. But there’s still plenty to do, and we can’t do it without you! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funding to promote research into better treatments and a cure by joining Team NPF, where you can walk, run, cycle, play bingo or even create your own DIY event. Contact our Patient Navigation Center for free, personalized support for living a healthier life with psoriatic disease. And keep the National Psoriasis Foundation going strong by making a donation today! Together, we will find a cure.