Striking Photos Prove This Life-Threatening Disease Is Not a 'Childhood Thing'

Ian Pettigrew knows cystic fibrosis isn’t a “childhood thing.” He’s 46 and living with the life-threatening genetic disease. In the 1950s, children with CF were not expected to live long enough to attend elementary school, according to the Cystic Fibrosis Foundation. Today, nearly half of the CF population is age 18 or older, and adults are living into their 40s.

Around a year ago, Pettigrew, a portrait and fashion photographer from Hamilton, Ontario, set out to photograph fellow adults with CF. Six thousand miles, 25 cities and 92 subjects later, he published “Just Breathe,” now offered in clinics and doctors offices all over North America. Pettigrew, who experiences less severe symptoms and was not diagnosed until age 38, wanted to give hope to kids and teens with CF who face scary expectancy statistics.

“One of the goals of this project was for younger people with CF to see the portraits and know there is future for them,” Pettigrew told The Mighty in an email. “Yes, there are varying degrees and not all CFers are alike. But with the advances in treatment, proper nutrition and exercise, it is a far brighter future than even just 10-15 years ago.”

Pettigrew told The Mighty the response to the book has been almost overwhelming.

“People message me and say the book has changed their lives,” he said. “It’s been humbling.”

He hopes, for those unfamiliar with CF, the portraits will raise awareness about a chronic disease that affects about 30,000 people in the U.S. and 70,000 people worldwide. People with CF inherit a gene that causes thick mucus in the lungs, pancreas and other organs and often results in symptoms like persistent lung infections, shortness of breath, coughing and salty-tasting skin.

“People still have to realize this is a fatal, life-shortening disease,” Pettigrew told The Mighty. “[CF] is brutal and heartbreaking. But there’s a sense of hope and optimism as well.”

Pettigrew is now focused on his second book, “Salty Girls,” which will feature adult women with CF. So far, he’s photographed 56 subjects. The project came to life after Pettigrew saw two models — one with Crohn’s disease in a bikini and displaying her colostomy bag and another with vitiligo, a skin condition, being interviewed by Tyra Banks. “I just thought, well, it’s time for a model with CF!” Pettigrew wrote on his website. “[The second project is] dedicated to showing how beautiful those fighting CF truly are… These women are inspirational and fearless, and we want to show hope for those younger CFers.”

To view more from “Salty Girls,” head here. If you’d like to contribute to Salty Girls’ Kickstarter campaign, head here. To purchase “Just Breathe,” head here.

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