The image of psoriasis
Participants in the Life with Psoriasis Photo Contest help create a picture for the disease
There are at least 150 answers to the question, "What's it like to live with psoriasis?"
The answers don't all look the same, but the 150 photos submitted for the Psoriasis Awareness Month Life with Psoriasis Photo Contest show the diverse ways people cope with psoriasis and psoriatic arthritis.
The photos show the isolation facing people with severe psoriasis, the struggle to control their disease and the effect the disease has on those who care for people with psoriasis. The pictures also show the triumph people with psoriatic diseases find when their skin clears or the victory they feel when they don’t let their disease get in the way of doing the things they love. There are people with psoriatic arthritis hiking mountains, kids with pink patches swimming in pools, women with flare-ups on their skin wearing strapless dresses and moms and dads with psoriatic disease enjoying time with their loved ones.
They say a picture is worth a thousand words. The 150 photos on the Psoriasis Awareness Month website are worth even more. While it was hard to whittle it down, here are the stories behind the winning photographs in the Life with Psoriasis Photo Contest.
Pennie Saum had just uploaded the photos she shot with her iPhone when it hit her: A single image could explain and describe the impact psoriasis and psoriatic arthritis has had on her family.
It's a simple photo, really. Her husband Aaron's hand is on the bottom, covered with the rough pink patches of psoriasis. The soft hands of their sons, ages 12 and 7, lie on top.
"This photo is about the impacts of this disease on generations, on families, on a person's life," Saum said. "This photo makes a statement — 'psoriasis can't be caught.' This photo represents so much for so many."
She wondered what others would think.
As it turns out, her photo gave others a lot to think about. The photo has received more than 600 "likes" since it was posted on the National Psoriasis Foundation's Facebook page and garnered dozens of comments. It also won her first place in the photo contest.
"Praying for your dad and all of you," wrote one woman when the picture was posted. "My children have been my support as well," wrote another. Some wrote about the fear they have that their children might develop the disease. Others described the pain of watching their loved ones cope with the pain of psoriasis. Many just thanked Saum for sharing the photo.
Saum's mission is to educate others about psoriasis and psoriatic arthritis. She wants other people to know how much psoriasis affects those who have it and the people who care for them. Aaron has psoriasis on more than 95 percent of his body. Psoriatic arthritis affects his hands, feet and ankles. He goes through a gallon of lotion a month and quit full-time work because of the disease, Saum said. Their boys struggle with how much the disease limits their dad's activities and how he can't participate in many typical father-and-son activities, like tent camping, because exposure to cold temperatures and sleeping on the ground would be incapacitating. But the boys see the bright spots, too — like having a stay-at-home dad.
Saum also is seeing some bright spots by reaching out and sharing her family's story and photo.
"I was completely overwhelmed by the comments on the photo," Saum says. "This photo unified those that are suffering, but it also impacted those that are not. I was speechless reading comment after comment — many that said, 'I get it, I totally get the meaning behind the photo'— to me, that means the world."
People living with psoriasis and psoriatic arthritis, especially when it's moderate to severe, can feel particularly isolated.
Erika Ramirez, who has plaque psoriasis and vitiligo, wants people to know psoriasis can be emotionally as well as physically damaging. She set out to capture those feelings with the picture she submitted for the Life with Psoriasis Photo Contest. The portrait shows Ramirez crouched on the floor of a dimly lit room with bright sunlight beaming through a window.
"I wanted to capture some of the emotions I have felt during my teenage years and also show that I am comfortable in my own skin," she said.
Ramirez, who was diagnosed with both diseases at age 11, used to cover up with clothing, even wearing long sleeves in the middle of the summer in the South.
She uses topical creams and phototherapy, and her psoriasis responds quite well to both but only for short periods of time.
Thanks to the support of friends and family, Ramirez is starting get more comfortable in her own skin.
"I am as self-confident as I could ever be, and I will continue to spread awareness and [educate] people by showing that," she said.
It's clear from his photo that T.J. Arehart is full of incredible spirit. The picture of the 9-year-old with a beaming smile, resting his arms on the side of the pool, betrays nothing about what had happened shortly before the photo was snapped.
His mom, Jamie Arehart, snapped the photo while on a family vacation, shortly after people left the pool after noticing T.J.'s skin.
"I was crying and my son, T.J., said, 'Mom, don't worry about it. That means there is more room for us to swim now,'" Arehart said. "I was so proud of him that I snapped a picture to remember how b he is."
While the psoriasis has been quite severe — covering 95 percent of his body and making it difficult for him to run and play — he is responding well to treatment, Arehart said. The disease hasn't dampened his optimistic outlook, either.
"T.J. actually says that God gave him psoriasis to help others understand that it can happen to anyone, and because he is so good-looking, God had to slow him down with the ladies," she said.
T.J.'s photo quickly became a fan favorite during the Psoriasis Awareness Month photo contest. Still, both he and his mom were surprised to learn the photo won third place. Arehart is hopeful more awareness of psoriasis will lead to more understanding.
"We want people to ask questions and not stare," she said. "At the end of the day, we all just want to be accepted."