The burden of cystic fibrosis (CF) is both physical and psychological for those with the disease — a struggle that many people are unaware of. Photographer Ian Pettigrew recently published the book Salty Girls to capture CF patients’ everyday reality and to celebrate the women who suffer from the disease and persevere despite their daily struggles with CF.
Salty Girls portrays women diagnosed with cystic fibrosis — who struggle with symptoms that can range from persistent coughing and thick mucus, wheezing, shortness of breath, lung infections, and inflamed nasal passages to poor weight gain and growth, intestinal blockage, and severe constipation — in all their beauty, however much it differs from society’s standards.
“Imagine what it is like growing up as a woman in today’s society, where the media demands perfection, and where body-shaming has become all too prevalent,” Pettigrew said to Cystic Fibrosis News Today. “It’s a constant struggle to maintain this concept of ‘beauty’. Now imagine you have double lung transplant scars, meconium ileus scar, liver and pancreas transplant scars, or PICC line and mediport scars.”
“Because CF affects the digestive system, the appearance of being underweight is prevalent, leading to snarky observations of ‘anorexic.’ This is the reality for many women with cystic fibrosis,” he added.
Salty Girls aims to challenge the norm and help end body-shaming through photographs of female CF patients embracing their bodies and willing to reveal their CF-related scars.
“NO MORE feeling embarrassed or ashamed of their bodies, The Salty Girls have now inspired other women with CF, from literally all around the world,” wrote Pettigrew. The women photographed for the book hope to bring others to likewise embrace their strength, resilience, and innate beauty. Salty Girls grew out of another project by the photographer meant to raise awareness for CF, as well as to call all women to stand together, be bold, and know that they are beautiful.
That other project is Pettigrew’s first book of adult CF patient portraits, Just Breathe. Around the time he was working that book, he came across a photo of the model Bethany Townsend, who suffers from Crohn’s disease, and an interview of another model who suffers from the skin disease vitiligo. Their publicity made him realize there was no public face — no model — with CF, and he decide it was high time for one. “I know what these woman go through on a daily basis; everyday is a struggle,” the photographer said, made worse because, “to the uninformed, it’s an invisible fatal disease. With this book it’s invisible no more.”
Salty Girls includes photos of 77 women, taken with their own clothing and posing in more than 25 cities. The project was initiated in August 2014, published over a year and 10,000 kilometers’ worth of traveling later, and is now available online here. Four of the women featured in the two books have since died, a fact the photographer wants noted to remind people that “time is not kind and on our side.”
The books Salty Girls and Just Breathe were also recently featured in Stephen Shannon’s CF weekly column, where he selects articles that capture interesting events for the CF community. Shannon, who is a CF patient himself and a molecular biology specialist, wrote about the considerable media attention being given to Pettigrew’s exclusive work for Cystic Fibrosis News Today.