When Jonathan Scott first spotted what looked like a rash on his skin, he wasn’t sure what it was. The problem was … neither did his doctors. It took him a year—and visits to three different doctors—before he was finally diagnosed with psoriasis.
“It was like a mystery. No one could answer it,” said Scott, an NFL player who was diagnosed in 2010. “Doctors couldn’t answer it until I got to the right doctor.”
For Scott, getting the right diagnosis was the first step toward getting his psoriasis under control.
“When I went to the right doctor, it was like, now I have proper information, now I understand what it is,” he recalled. “It’s hard to be educated about something you can’t comprehend.”
Tomorrow, Scott will help educate lawmakers about psoriasis by speaking at a special congressional briefing on psoriasis in skin of color. The briefing, organized by the National Psoriasis Foundation, will highlight the unique challenges facing people of color with psoriasis, as well as the entire psoriatic disease community.
Like Scott, who is African-American, for many people of color, the challenges begin with a struggle to get a proper diagnosis. That’s because psoriasis in skin of color can look different than it does in lighter skin tones. According to Dr. Amy McMichael, chair of dermatology at Wake Forest Baptist Medical Center in North Carolina, psoriasis can have a different appearance in darker skin types. For instance, in African-American patients, psoriasis can look more violet than red, and the scales can be thicker than they are in lighter skin.
Misunderstandings hit close to home
Even after getting the right diagnosis and treatment, people of color with psoriasis can continue to confront a lack of awareness about the disease. Sometimes it shows up in the most unexpected places, like the hospital. Ninfa Cantu, a Mexican-American woman living in Texas, has experienced this firsthand. Having lived with psoriasis since 1979, she knows when she’s having a flare. She once had a bad flare after taking her blood pressure medicine that required immediate treatment, she said. But when she went to the emergency room, she had to fight for doctors to take the problem seriously.
“I said, ‘Look at me, look how I am.’ I had to make a fuss,” she recalled.
This isn’t the only run-in Cantu’s had with people who don’t understand her condition. She’s also experienced it closer to home, at times facing a lack of acceptance in her own community. Some people at her church avoid her, she said, and her psoriasis can make it difficult to find a hairdresser willing to cut her hair.
Scott sometimes has to explain what psoriasis is to people who haven’t seen it before.
“Let’s say I have a spot on my knee,” he said. “People are like, ‘What happened to your knee?’”
If they don’t know what psoriasis is, he describes it by saying, “I have a real hyper immune system; my skin grows super fast.”
Creating community among psoriasis patients
But Scott doesn’t mind telling people what he has. He considers himself an ambassador for psoriasis, and in addition to teaching people who don’t know about the disease, tries to reach out to people living with psoriasis.
“It’s a chance to embrace what you can’t change, and at the same time, be able to give some type of hope to someone who might feel a sense of despair,” he said.
He gains inspiration from his nine years in the NFL, playing most recently for the Atlanta Falcons. As a football player, he said, even if his team was down with only a few minutes left on the clock, he never gave up hope.
“My mentality is like, if there is time on the clock, there’s a chance to win,” he said.
He uses that same resolve to fight back against his psoriasis.
“I’m not going to let this beat me down,” he said. “I’m not about to sit and feel sorry for myself. I’m going to get out there and do something. Get more knowledgeable. Create more awareness. Get involved. Talk to people.”
Improving the lives of all people with psoriasis
When Scott talks to members of Congress tomorrow, he’ll encourage them to improve the lives of everyone with psoriasis, including people of color. He’d like to see more funding for psoriasis research and special programs to help children with psoriasis, he said.
The briefing, congressionally sponsored by U.S. Representative Eddie Bernice Johnson of Texas, will also include Dr. Paul Wallace, a Beverly Hills dermatologist of Wallace Medical Group, Inc., and McMichael. They will urge Congress to help this patient population with policy solutions such as increasing access to affordable treatments and therapies, and funding programs like the Centers for Disease Control (CDC) Public Health Agenda, which addresses psoriasis and psoriatic arthritis in underserved populations. Solutions like these will help ensure that Scott, Cantu and all psoriasis patients have access to the care they need.
It all starts by making sure the voices of people with psoriasis are heard, Scott said.
“My biggest thing is, let’s change our perspective. Let’s change our thought process and think about the community and the people who suffer.”
Driving discovery, creating community
For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! 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 funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.