Venice resident Kelly Li is one of 35 million Americans suffering from eczema, but she is one of only 11 featured in a photographic essay called Images of Isolation, created to raise awareness about eczema.
Images of Isolation, a collection of Polaroid photographs taken by celebrity photographer Jeremy Kost, visually brings to life the impact of eczema on the lives of patients who live with this chronic condition. It debuted last month to coincide with National Eczema Awareness Month.
According to the National Eczema Association, eczema is a condition characterized by recurring flare-ups of dry, red, scaly and itchy skin. Eczema — a general term for any “dermatitis” or “inflammation of the skin” — can appear anywhere on the body, including on the elbows, face, arms, legs and behind the ears and knees.
During “flare-ups” or “flares,” open weeping or crusted sores may develop from scratching or from infections, says the National Eczema Association.
“Having eczema, it’s a disease, and it just takes over your life,” says Li, a lawyer for Waitex. “So if you have a flare, your skin is itchy, inflamed and you’re tired. You can’t sleep. And all the other effects of eczema.
“And when you don’t have a flare, you’re just worried about getting a flare. You’re trying to do everything to prevent getting another flare. It’s a continued thought process.”
Li, 31, met photographer Kost in August at the National Eczema Conference in St. Louis.
“Jeremy [Kost] was there and talking about the project he was working on [Images of Isolation],” Li says. “I thought it was a really good project. After speaking to him, I decided to participate. I think it’s a good way to bring out eczema to a public consciousness.”
Kost agrees. He was approached by the Images of Isolation campaign to work on the project and thought it was a great opportunity.
“I typically focus on celebrities and downtown characters who kind of seek the spotlight,” he said. “It’s kind of interesting to focus on people that shun the spotlight. It gave me an opportunity to explore myself as an artist and look at the nature of people — a person suffering from eczema.”
Kost took pictures of Li in St. Louis. He remembers that Li was apprehensive about the project at first, but after she realized the purpose of Images of Isolation, she hopped on the bandwagon.
“I think her involvement and willingness to be involved has nothing to do with the vanity of being photographed” like it does for so many, Kost said. “It really kind of impressed me about her.
“I think all of the folks involved in this project really did it for the idea of helping others in mind, and I think that’s special. I know that Kelly is the same way.”
Kost and Li are pleased with the turnout of Images of Isolation.
“It was empowering to realize that other people felt the same way that I did,” Li said. “It feels isolating when you’re sick.”
Li gets flares as often as every other week. “It depends on the season, stress, the weather, nothing,” Li said.
To plan and prepare for flares, she brings pillows, sheets, towels, soaps, medications, ointment, extra clothing and, oftentimes, a humidifier, when she travels.
Li said she always had a “little bit” of eczema growing up, but it didn’t become severe atopic dermatitis until three years ago.
Atopic dermatitis (AD) is the most severe and chronic type of eczema and frequently begins in childhood. Approximately ten percent of the population is at some time in their life affected by atopic dermatitis, says the National Eczema Association.
It’s one of the most common skin diseases around, but a large global study to assess eczema’s impact, the International Study of Life with Atopic Eczema (ISOLATE), revealed that living with the disease can cause emotional suffering and have an isolating effect, as Li attests to.
The ISOLATE study was comprised of interviews with 2,002 patients from eight different countries over the age of 13 and caregivers of children age two to 13 with moderate to severe eczema, according to the National Eczema Association.
As a result of the study, the National Eczema Association teamed up with Kost, the celebrity photographer known for his unique use of a Polaroid camera, and Novartis Pharmaceuticals with the goal of raising awareness about eczema, and Images of Isolation was made.
Li hopes Images of Isolation will raise awareness about eczema, not just among people, but in the medical community too.
“I hope to raise awareness among the people — but also mainly with the doctors and the medical community — that eczema is something that not only affects your health but your life,” she said.
Information about eczema and a free copy of Images of Isolation, are available at www.na tionaleczema.org