Look beyond diagnosis to see beauty and humanity

One of the highest-profile presenters at the 26th European Academy of Dermatology and Venereology (EADV) Congress in Geneva is not a researcher, but a fashion photographer who for nearly two decades has worked to showcase the beauty and humanity of individuals who live with genetic, physical and intellectual differences.

Rick Guidotti, founder of the not-for-profit organization Positive Exposure, says his message for dermatologists is simple:  See patients as people first.

“I want to make sure that when they're looking at patients, they are seeing ambassadors-not the disease or diagnosis, but always the person,” he tells Dermatology Times.  

Pediatric patients with ichthyosis (left) and epidermolysis bullosa (right). Photos courtesy of PositiveExposure.

Mr. Guidotti shared his images and spoke here in Geneva at a plenary session Wednesday. Many of his subjects live with conditions familiar to the readers of Dermatology Times, including psoriasis, epidermolysis bullosa (see image), ichthyosis and tuberous sclerosis. Photo galleries for 31 different genetic conditions are posted on the Positive Exposure website.

Over the years, Mr. Guidotti has collaborated with a variety of patient advocacy organizations, medical schools, and other institutions to spread the message of looking beyond appearance to see the person. In 2014, he collaborated with Novartis to develop an awareness campaign known as Skin to Live In that highlighted individuals with Psoriasis including Melissa, a professional dancer living in New York (see photo).

For Mr. Guidotti, it all started one day in 1998 in New York City, when, on a break from a photo shoot, he spotted a girl with albinism standing at a bus stop. Captivated by the white hair and pale skin, he went on to research the condition, but was startled and upset to find “dehumanizing” images, and no positive portrayals, in medical textbooks.

“It was always the same image of a kid in his underwear against the wall in a doctor’s offices with those black bars across his eyes,” he says. “Then there are also the negative portrayals of albinism in multimedia and motion pictures. That's when I started to realize that we needed to create an opportunity to see beyond that disease.”

‘Framing’ Medical Education

Photographs are only one part of the initiative. Mr. Guidotti and his team have also developed a video-based medical education series called Faces Redefining the Art of Medical Education (FRAME) that aims to put more humanity in how healthcare professionals learn about genetic conditions.

One topic covered in the FRAME initiative is ichthyosis. The education includes an 11-minute video in which individuals such as Hunter, a 20-year-old born with harlequin ichthyosis (see picture) not only describe the clinical features of the condition, but also explain what it’s like to live with it.

Mr. Guidotti hopes that by seeing people with genetic conditions talk, move, and smile, clinicians will have a takeaway quite different than the “patient-as-a-specimen” format he says is predominant in medical educational literature. “It places humanity front row and center in medical education, which is exactly what needs to be done,” he says.

Mr. Guidotti says one of the primary goals of Positive Exposure is to ensure that the message of “it’s not what you’re treating, it’s who you are treating” is embedded into the medical training of health care providers.

But perhaps the bigger audience is the general public. Positive Exposure has also conducted a number of gallery exhibitions throughout the world, including one exhibition in Rome, Italy that opened one week before the EADV meeting.

“When we are walking down the street and we see someone who has a physical difference, we can either stare at them or look away,” he says. “What I have learned is that the look away is usually more painful than the staring. So we need to create ample opportunities through presentations and public exhibitions for the public, so they can steady that glance and see beauty in that face coming towards them.”