Photographer ‘illuminates’ rare cancers

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Rick Guidotti captured photos of people affected by rare and underserved cancers

The photos will be showcased in an exhibit in Chicago called "Rare Cancer Illuminated"

CNN  — 

The radiant faces in photographer Rick Guidotti’s newest exhibitions don’t look like they belong under the title “Rare Cancer Illuminated.” And that’s exactly the point.

“I am not photographing a disease; I am photographing hearts, passion, strength, beauty and community,” Guidotti said. “This is about seeing beyond the diagnosis, seeing humanity and honoring that human being and their dignity.”

The former fashion photographer, who was known for his images of Cindy Crawford and other famous models in the 1990s, was forever changed when he saw a girl with albinism and realized that the fashion industry wouldn’t classify her differences as beautiful. But Guidotti saw beauty everywhere. It was after that fateful moment that he learned everything he could about genetic differences and launched his project, Positive Exposure.

In his latest exhibition, Guidotti shares positive portraits of patients, family members, advocates and health care professionals impacted by rare and underserved cancers. These diseases, like pancreatic cancer, myelodysplastic syndromes and acute lymphoblastic leukemia, affect children, teens and adults alike.

In the United States, rare cancers are defined as fewer than 15 per 100,000 cases per year. Patients with underserved cancers may not receive physical or emotional resources, and patients often struggle to have their diseases diagnosed and treated properly. Guidotti hopes that his exhibit, which will debut in Chicago on June 2, before the 2016 American Society of Clinical Oncology annual meeting, will help bring rare cancer communities together.

“Even though they came from different communities, I saw similarities in the people I photographed,” Guidotti said. “They had the same passion, enthusiasm, sadness and push for inspiration, and through such strength, they just owned it. They have the same drive to change the way people see rare cancers. They were alone, but through this, they said they began to realize they weren’t alone all along.”

In addition to raising awareness, the goal is to encourage greater collaboration between rare cancer communities to discover treatments, to provide better access and support and to more efficiently diagnose these conditions.

Guidotti worked with biopharmaceutical company Baxalta to reach out to 20 rare-cancers organizations to find ambassadors and advocates for his photo series. He wanted to give them a platform for voice and visibility.

He approached each session like he would a fashion shoot, learning each person’s story and working with them on how they wanted to be captured.

“Each ambassador realized they were talking to the world,” Guidotti said. “I just watched them light up after that. Self-acceptance creates self-esteem, which leads to self-advocacy. They take such pride in what they are doing, and their impact will be magnificent.”

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    Like with other projects Guidotti has worked on, such as the “On Beauty” documentary and photo series highlighting rare genetic differences, he hopes that “Rare Cancer Illuminated: A View from Within” will spark a dialogue that only continues.

    “I want people to see their stories and feel inspired to use their own talents to celebrate human diversity and create new and incredible initiatives,” he said. “We want to start little storms that keep on going.”