Even though psoriasis can seem like an isolating disease, it’s comforting to know there are more than 125 million other people around the world who have it too. And you know what they say, there is strength in numbers.
World Psoriasis Day (Saturday, Oct. 29) is the day we unite as a global community to:
- Fight prejudice, stigmatization and discrimination;
- Raise awareness, understanding and hope; and
- Gain access to proper diagnosis, treatment and an improved quality of life.
Take the World Psoriasis Day Pledge and make your voice heard!
Throughout the month of October, we launched our special Psoriasis Around the World series, which shared stories of people living with psoriatic disease on every inhabitable continent.
- Psoriasis Around the World, Part I: The introduction
- Psoriasis Around the World, Part II: Living with the stigma
- Psoriasis Around the World, Part III: Access to care
- Psoriasis Around the World, Part IV: Doctors’ perspective
Painting a picture of psoriasis
Now we’d like to share the inspiring stories of three Psoriatic Psuperheroes who went outside of their comfort zone for the sake of art and to help spread awareness about World Psoriasis Day, with the help of Novartis and world-famous body painter Natalie Fletcher, who also has psoriasis.
Fletcher, an artist in Portland, Oregon, won the first season of “Skin Wars,” a reality TV bodypainting competition that first aired on the Game Show Network in August 2014. Since then, she has appeared in the spinoff show, “Skin Wars: Fresh Paint,” and in TV commercials, news spots and marketing campaigns around the world.
As part of its Clear About Psoriasis survey, which saw more than 8,300 global patients share their experiences of living with psoriasis, Novartis worked with Fletcher to bring these stories to life through an inspirational body painting series held in London. “We took quotes from some of that survey and depicted those quotes onto the models,” Fletcher said.
For World Psoriasis Day, Fletcher teamed up with Novartis once again to illustrate the stories of three psoriatic disease bloggers through bodypainting sessions, which took place all in one day at a studio in New York City. “This campaign was much more personal,” Fletcher said. “Instead of working with models, we worked with patients who had psoriasis.
“People with psoriasis aren’t always the most willing to take off their shirt and show it, so they were extremely brave,” she added. “I had a phone conversation with each of them leading up to the day, learned their stories and ended up doing a lot of research to find the right design that would be perfect for them.”
Howard with doves
Rev. Howard Chang has lived with severe psoriasis and eczema for more than 35 years. He writes “The Itch to Beat Psoriasis” blog for EverydayHealth.com and is the NPF Northern California Division Sacramento Committee Chair. When he received the invitation from Novartis to fly to NYC for a day to take off his shirt and have his body painted by Fletcher, he was stunned.
“I wasn’t sure what I was reading,” Chang said. “I’m a writer, not a model! Exposing my body in front of strangers is not really in my comfort zone, especially since I have a lot of psoriasis on my skin. I was pretty anxious about it to be honest. But I felt it was a once-in-a-lifetime opportunity and wasn’t sure if I’d ever have another chance to work with someone as talented as Natalie.”
Chang was a little anxious about the paint reacting adversely to his skin, but the paint Fletcher applies is “body safe” and something that she uses on her own psoriatic skin. Chang did a patch test beforehand with no trouble signs, “So we went with it,” he said, adding that he did an occlusion/wet wrap steroid treatment the night before, “so I wouldn’t be as reactive.”
The design Fletcher chose was three doves with sunlight coming down from Chang’s shoulders, which to him represent hope and peace. “My faith is a big part of who I am, and the dove is a symbol of my faith and a symbol of the Holy Spirit,” he said.
“I felt the psoriasis itself being in the picture was an important piece of the painting. To see the doves flying up and the light coming down, it’s about overcoming and empowering and rising above. It was a really great experience, and I’m so glad I did it.”
Alisha with orchids
Alisha Bridges is the 2015 NPF Volunteer of the Year, and her blog, “Being Me in My Own Skin,” offers a candid view of what it's like to live with psoriasis as a person of color. The Atlanta resident has been living with severe plaque psoriasis since the age of 7, which she believes was triggered by a bad case of the chicken pox.
When Bridges received the invitation from Novartis to have her body painted by Fletcher in New York, unlike Chang, there was no hesitation. “I saw video of what Natalie did with Novartis in London a few months ago. So when people from Novartis emailed me and asked if I wanted to be a part of this project, of course I said yes! I was super excited,” she said.
For Bridges, Natalie chose to focus on the uniqueness of having psoriasis as a person of color and the special challenges that come with that, including the tendency to be misdiagnosed. “She chose to paint me with a particular flower that was very unique and rare in nature to represent my unique and special struggles with psoriasis,” Bridges said.
“It was almost surreal. I couldn’t believe I was sitting there being painted by someone who won ‘Skin Wars’ and who also has psoriasis. What struck me most about the conversation we had was that the type of paint she was using wouldn’t irritate our psoriasis,” Bridges said.
“Makeup artists, for instance, don’t usually understand psoriasis and how different agents can irritate their skin. The fact that someone who was doing artwork on us not only understood our stories, but also the mechanics of our diseases, what we can and can’t use – that was really awesome to me.”
Jaime with butterflies
Jaime Moy of Michigan runs the blog “A Spot of Hope.” Her son, Andy, was diagnosed with psoriasis and psoriatic arthritis as a toddler. When the doctor inquired from whom Andy may have inherited psoriatic disease, neither parent had a clue until his mother experienced her first outbreak three years later at the age of 28.
Moy had an idea of who Natalie Fletcher was when she received the Novartis invitation because her son, now 18, was a fan of “Skin Wars.” “It would have been great if he could have come along because he would have loved it so much,” Moy noted. “But he’s in college and he had mid-term, so he wasn’t able to go.”
Moy’s story is one of transformation, having transitioned from being a loved one and caregiver of a psoriatic disease patient to becoming a patient herself, so Fletcher chose to tell her story through monarch butterflies.
“I was really impressed and flattered by how much background research she had already done about me and my son. It was as if we had already met, and I respected the fact that she is also coming at this project as a psoriasis patient herself,” Moy said.
“They wanted to make sure I could shower before I left, but I looked at it from the point of ‘I’m going to get on a plane soon. This is the most amazing thing that has ever happened to me. I want to save it for as long as I can.’ So I put clothes on over the top and wore it home. It was just too pretty to wash away so quickly.”
Each person took three hours to paint, giving Fletcher ample time to become acquainted with Chang, Bridges and Moy in a rather intimate way, and with each of them, she shared her own personal struggles of living with the stigma and physical discomforts of psoriatic disease.
“After we finished the last piece, I ended up bawling my eyes out because it was a long, emotional and exhausting day, and because they were such wonderful people,” Fletcher said. “We live our lives the best we can with the cards we are dealt, so ‘hope’ really was the big word of the day.”
All photos by David Plakke.
The opinions expressed by NPF Blog contributors are their own and do not reflect the opinions or positions of the National Psoriasis Foundation. The information posted on the NPF Blog is not intended as, and is not, a substitute for professional medical advice.
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.