Age: 46 • City: Hamilton, Ontario
You have CF, but your case is different. You decided to do something about it. You created a book—Just Breathe. What went in to that?
I was diagnosed [with CF] later in life at 38 years old. So mine is very, very mild compared to those diagnosed at birth. A lot of people think it’s a childhood disease, but it’s not anymore.
Males who are born with CF are sterile. So that’s the marker. It’s been eight years since I was diagnosed. I was married and we were trying to conceive and couldn’t figure out why. I bounced around from doctor to doctor and then one identified CF as why.
One of the most common signs of CF is salty skin; our sweat is really, really salty. I had salty skin my whole life, but no one really paid attention to it. I didn’t have the lung issues that most CF people do.
You decided to do something about it. You created a book.
Yes. As a photographer, I wanted to know what I could do to spread awareness. I decided to go out and have adults tell their story with a portrait.
The goal is to raise awareness. There are 92 people in the book. Half are from the U.S., and half from Canada. I did two separate trips around the States. I drove from Hamilton, Ontario, to Florida and took 44 portraits along the way.
I wanted a good cross-section of people to show all of the different issues we deal with. The oldest is 59. A study came out recently that said over half of the sufferers now are over 18. Thirty years ago, you were dead by the time you were 21.
There are a lot of major issues I wanted to address focused on adults living with this. The cost of the mediation is huge. Some of the people in my book had to decide between grocery money and medication. Kalydeco is $1,000 a day, but it is helping people.
What was the buzz from the CF community about your project?
They were excited about it. They said, “Thank God someone is talking about this because people think only little kids have this.”
How did you find people to profile?
Strictly through social media: Instagram, Facebook, Twitter and CF forums. Friends would tell friends. Some would tell five friends. I found these little clusters. I had a map. I saw that I had seven people here and then another five people here. I planned a route. I went to Chicago, Minneapolis and Iowa. Then my second route I did Connecticut, Baltimore and Florida. On my way back, I did Memphis and Nashville.
What did you learn?
People are so positive and hopeful. There is so much positivity in people trying to beat this thing. But what they didn’t tell me is that once you know you’re going to live a shorter life, you tend to pack a little more in to it. One guy whose photo I took died three days after I took his photo. It brings it home. One girl in the book has been in a coma since New Years Eve. We have people in here married with kids, and they want to have the resemblance of a normal life. They adapt, they live. It’s also a very white disease and you’ll see that when you read the book. The origins trace back to northern Europe. The book has 90 white people, a Hispanic girl and a black guy. He’s a body builder and he has CF.
So what’s next?
My second project, Salty Girls, is all women who have CF and their issues as women with it. Some of these women are completely covered in scars from operations throughout the years. When you have a lung transplant, it’s not a little scar. Some of these girls have feeding tubes. This stemmed from when I was taking portraits and they were telling me a lot of similar stories. Dating and meeting people are really hard. Try getting a second date when you have to take meds or you’re coughing up phlegm. These girls said that it’s been a long time since since they felt good about themselves. So I decided to start a book on them. It’s a little racier, but that’s what these girls wanted. They wanted to be seen in a sexier light. This disease is quite a weight on these girls.
Get a copy of “Just Breath” by visiting Ian’s site: http://bit.ly/ianpettigrew.
