Lexington resident Gretchen Boerner hopes to spread awareness about Cystic Fibrosis (CF) through a portrait series book by Canadian photographer Ian Pettigrew.
“It will be a book of 100 portraits of only adults with Cystic Fibrosis,” Pettigrew said while on a recent trip. “For the longest time, CF has really been a disease that’s focused more on the kids. It’s always been known as a childhood disease, but it’s only been known as a childhood disease because the mortality was basically fairly young. It’s been only up until recently, maybe 20-25 years ago people were only expected to live to be only 18 but now it’s well into your 40s.”
Boerner, 27, was diagnosed with the genetic disease as an infant. According to the Cystic Fibrosis Foundation website, CF primarily affects the lungs and digestive system. People with CF have a defective gene and its protein product causes the body to produce unusually thick, sticky mucus that clogs the lungs and leads to fetal lung infections and obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients.
“When I was born, the doctors told my parents I would maybe live to be (age) 8, that I would not go to prom or ever get married and have kids,” she said. “They said I wouldn’t live to do any of that.”
Pettigrew, 45, revealed he also has a mild form of CF which was diagnosed at age 38. His symptoms are mild.
His project, “Just Breathe: Adults Living with Cystic Fibrosis”, is focused solely on adults and the issues they go through with managing the disease and everyday life.
“Kids have their parents and family a lot of times to fall back on and don’t have to worry about adult issues like simply, ‘How do I pay my rent?’ and ‘How to I pay for my medication?,’” Pettigrew said. “So those are issues I wanted to touch upon as well. And as a lot of people age and their lung function does start to slip. I’d say, at least 50 percent of the people I’ve photographed so far have either had or are on the list to have a double lung transplant.”
Other complications from CF include osteoporosis, diabetes, and many other infections, Pettigrew said. There is no cure for the disease but remarkable strides have been made in the treatment of it.
“This month is the 25th anniversary of the CF gene actually being discovered,” he said. “That’s how we’ve come so far, because in the 80s and 90s when they were first able to do mapping of the gene… they actually found what is the gene that causes CF and now they are able to make the medicine to target the specific gene.”
Only about 30,000 people in the United States suffer from CF and about 70,000 people worldwide. Nearly half the CF population is over age 18, Pettigrew said.
“It’s been a complete generosity and outpouring of support for this project,” he said. “Even people with younger children with CF are saying maybe they will let their children read the 100 stories in the book because it’s stories of people in their own words.”
Boerner graduated from Lexington High School and The Ohio State University with an English degree. She has a son, Brighton, 6, who she says “is the best thing I’ve ever done.” She also has the love and support of her immediate family, which is a blessing, she said.
“I think I can probably speak for everybody who has participated in this project so far that it’s been amazing that he’s doing this because he is so focused on adults,” she said. “It’s been so nice to have something that’s focusing on the adults because a lot of us grew up thinking we weren’t going to be adults, so there’s a whole set of challenges that people didn’t think we were going to deal with.”
Pettigrew said he hopes to have the book out by Christmas. In addition to photographing people in Canada, he has also traveled to New York City, Atlanta, Florida, Connecticut, Chicago and other areas in the US to tell the adult stories of CF. Another project has spawned from the “Just Breathe” portrait series, called “Salty Girls,” which are empowering pictures of adult women posing with their feeding tube ports and/or scars from surgery. For more information on Pettigrew’s work visit his website.
“There are great survival stories in the book of people thriving in spite of CF,” he said. “That’s what I wanted to really focus on here.”
Twitter: @angelnichole222
