After meeting a friend’s nephew who was suffering from cystic fibrosis, Kyle Monk participated in a fundraising event called Great Strides, sponsored by the Cystic Fibrosis Foundation.
Motivated to further help and bring attention to those with the disease, the Los Angeles-based photographer decided to photograph portraits of those with CF.
“I felt by creating these dark, dramatic but silent and pretty images it would hopefully draw some attention (to the disease),” he said.
Cystic fibrosis, an inherited chronic disease, affects the lungs and digestive system. A defective gene and the protein it creates cause the body to produce abnormally thick, sticky mucus which clogs the lungs, leading to life-threatening lung infections. It also obstructs the pancreas, stopping natural enzymes from helping the body break down and absorb food.
Most of the people Monk photographed are between the ages of 3 and 8, but some are teenagers and adults.
“They were wonderful,” Monk said of his subjects, adding that they were mature and happy. He witnessed touching exchanges of love between the kids and their parents. The experience, for Monk, was uplifting.
Monk decided to include the treatment apparatus within the portrait. The nebulizer delivers inhaled antibiotics that thin the building mucus in the lungs. The vest helps clear the airways inside the patient’s lungs by loosening the mucus.
Approximately 30,000 people suffer from cystic fibrosis in the United States. The life expectancy of those living with the disease is less than 40 years old.
“They would look right at me,” he said, talking about the people in his portraits. “I could feel a chill running through me at certain times.”
Roughly one in every 31 Americans carries this defective gene but do not have the disease.
“I wanted to do something good with my photography,” Monk said. “I wanted to help out in some way.”
- Matthew Rond, CNN
May is National Cystic Fibrosis Awareness Month. You can help by donating to the Cystic Fibrosis Foundation or by participating in a Great Strides fundraising event. You can also follow the CF Foundation on Facebook and Twitter.
Nearly all CF treatments available today have been made possible in part because of the Cystic Fibrosis Foundation. You can view their drug development pipeline for a better understanding of the treatments available as well as those still under development.