Ashley Durand has been self-conscious about her body all her life. The 28-year-old Portland woman lives with cystic fibrosis, a life-threatening inherited disease characterized by a buildup of thick, sticky mucus that damages the lungs and digestive system. She struggles to gain weight, and a feeding tube juts from her abdomen.
But Durand recently agreed to don a bathing suit and pose for a portrait to raise awareness about the disorder — once largely regarded as a childhood disease — among adults. About 30,000 Americans have cystic fibrosis, with an estimated 1,000 new cases diagnosed each year, according to the American Lung Association.
Durand had no idea the campaign would attract worldwide attention. Initiated by Canadian photographer Ian Pettigrew, who was diagnosed with CF seven years ago, it has since grabbed headlines in The Huffington Post, Buzzfeed, Yahoo! News, Bustle, and the Daily Mail, among other media outlets.
Pettigrew was creating a photo series about adults with cystic fibrosis called “Just Breathe,” when he realized a disproportionate number of his subjects were women, Durand said. So he shifted focus, featuring strong ladies with the disease in a series called “Salty Girls: The Women of Cystic Fibrosis,” a nod to the salty skin and sweat common to people with the disorder.
The goal is to raise awareness and help young girls growing up with the disease to be confident in their bodies, Durand said. Many patients must deal with surgical scars, implanted medical devices, difficulty gaining weight, and side effects from medications, she said.
“It was very hard for me to strip down and put myself out there … I don’t look like a woman,” Durand said. “I look like a 12-year-old girl. The weight-gaining struggles and all that, it was pretty hard. I was insanely nervous to [pose]. Once I did it, I felt a lot better.”
The public response to the campaign continues to surprise her, she said.
“I wanted to show the world that even though we are dealing with this disease on a daily basis, we can have normal lives and we can be beautiful,” Durand said.
Durand, who grew up in Dennysville, is awaiting a double lung transplant. She’s listed for the procedure at Brigham and Women’s Hospital in Boston. With her lung function hovering around 20 percent, she relies on oxygen to walk long distances and ease her breathing while she sleeps. Doctors appointments, treatments, physical therapy, and medications often consume her days, she said.
But she feels buoyed by a trip last month to Daytona, Florida, where she supported fellow CF patients who ran in a charity 5K organized by the More Than Just Me Foundation. While Durand’s declining health prevented her from running, she formed a sisterhood with the women participants, she said. That’s no small feat, as CF patients must exercise caution around each other, avoiding touch and close contact for fear of spreading the varying types of bacteria harbored in their lungs, said Durand, who turns 29 next month.
“It changed my life,” she said. “I could cry right now. It’s the most profound thing, just to be around people. For the first time in my 28, 29 years, I have people who know what I’m going through, and see them face to face.”
Now back home in Maine, she’s heartened by the success of the Salty Girls campaign, she said.
“I’ve never been so confident in my life,” Durand said. “I’m proud.”