Beautiful Portraits Show Cystic Fibrosis Is Not Just a Childhood Disease


Ian Pettigrew sometimes thinks of himself as an interloper.

The portrait and fashion photographer based in Hamilton, Ontario, is a 45-year-old with cystic fibrosis (CF), a disease with a life expectancy of about 40, according to The CF Foundation Patient Registry. His symptoms are relatively mild, though, and he wasn’t diagnosed until he was 38.

“I follow many people [with CF] on Facebook and any problems I am having really pale in comparison,” Pettigrew told The Mighty in an email. So, as someone with relative health and a talent for photography, he felt an obligation to help raise CF awareness, particularly for adults with the disease.

“The general public regards CF as a ‘childhood’ thing,” Pettigrew told The Mighty. “It is also a disease where you don’t necessarily look ill.”

To change this, Pettigrew began a portrait series called “Just Breathe,” where adults with CF pose and then write about the unique experiences they have with the disease. Pettigrew says he knows a cure won’t come from his project, but he hopes it will inspire someone to sign up to be an organ donor.

“Probably a good 25 percent of the people that have reached out to me wanting to be part of this project are waiting for new lungs,” Pettigrew told The Mighty. “I am really doing this project to give those people more of a voice.”

So far, Pettigrew has only photographed a few subjects, but he has requests from all over the world. He’s focused on raising funds so he can travel to interview and photograph these people and eventually publish a book of the portraits. To follow his work, visit his website.

“CF hasn’t brought anything positive. It’s been shit. But… I think I can make a positive difference to other people’s lives. If maybe one person gets saved because this book influenced someone to sign their donor card that would qualify as uplifting.” — Ian Pettigrew

ian_001

“My double-lung transplant has given me a second chance to appreciate all that life has to offer.” — James, age 34

james_001

Jeff, age 52 [Interview pending]

jeff_001

If you’d like to make a donation to Pettigrew’s project, head here.

RELATED VIDEOS

Hip-Hop Star Faces Cystic Fibrosis Head On


When I ask Ryan Morrissette if it depresses him to have cystic fibrosis (CF), a genetic disease with an average life expectancy of about 40 years, the 19-year-old professional hip-hop dancer answers me matter-of-factly.

“No, not really,” he says. “I’ve always thought there’s no point in being sad about things you can’t change.”

Morrissette, from Maple Ridge, British Columbia, has been dancing since he was 2 years old. When he was 7, he began studying strictly hip hop. When he was 17, he and his hip hop crew, Freshhappeared on Canada’s Got Talent. At 19, he teachers, performs and has added music and rapping to his repertoire.

“I wasn’t supposed to live past 8,” Morrissette says. He’s managed his CF with medication, hour-long physiotherapy sessions, support from his family and friends and a dedication to health and fitness.

“My whole goal in life is to show people that they can go farther than what their disease — or whatever they have — says they can,” he told The Mighty.

Now, Morrissette is the focus of a documentary from 22-year-old filmmaker and photographer Danie Easton. “Dancing With Cystic Fibrosis” (trailer below), shows the 19-year-old and his family in an honest, behind-the-scenes look at life with the disease.

IMG_0051

“I want people to see what Ryan goes through every day just to stay alive and to see how he faces everything with a smile,” Easton told The Mighty. “I also want people to want to help him and people with CF.”

As she promotes her project, Easton is fundraising so Morrissette can afford an Airway Clearance Vest, a product that would loosen the mucus that builds in his lungs every day.

The vest could save Morrissette time each morning and night and more effectively keep his lungs clear, making it easier for him to dance, work out and breath in general. But when he talks about his CF, he doesn’t mention the help he needs. Instead, he talks about how he can help others. This is why he tells his story.

“People get told there’s something wrong with them, and they think it’s the end of the world. They think they have to stay in their room until they die,” Morrissette said. “That’s just not the case. You can do things that make your life as good as you want it to be.”

If you’d like to help Morrissette purchase an Airway Clearance Vest, head here.

Lying in a Hospital Bed 3 Years Ago, She Made a Vow. 'Look How Far I Have Come.'


sophieholmes3

When her lung capacity dropped to 60 percent, 19-year-old Sophie Holmes was rushed to the hospital and spent 3 weeks there hooked up to tubes and monitors.

“Being in the hospital was horrible,” she says. “I felt so weak and I was terrified cystic fibrosis was going to get the better of me.”

Anna Holmes, Sophie Holmes

Although there is no cure for the genetic condition that clogs the lungs with mucus, targeted treatments have increased life expectancy dramatically in the last 50 years. In 1959, children with cystic fibrosis rarely lived past 6. Today, the median life expectancy is in the late 30s, though it varies greatly based on the severity of the condition.

“I knew I never wanted to feel like this again, so I stopped moping in self-pity and did something about it,” Holmes says. “I made a vow to myself to make my health a priority.”

“I thought that being a personal trainer would be a great way to make my health my life,” Sophie says. “It would be my job to look after my health, so I wouldn’t have any excuses to not take care of myself.”

Her older sister Anna quit her job to help Sophie in her quest. Three years after Sophie’s stay in the hospital, they are both personal trainers and run their own business in the United Kingdom.

Anna and Sophie Holmes

“Cardiovascular exercise can help CF sufferers, and I wanted to make it a fundamental part of my life to give myself the best shot,” Sophie says. “I’m determined to not let cystic fibrosis stop me from pursuing my dreams.”

“You can do anything when you put your mind to it. Although my illness is serious, I don’t believe it has to define me as a person, and now look how far I have come.”

“People who suffer from cystic fibrosis shouldn’t let it hold them back. Now I want to inspire others to reach their potential and beyond.”

Help Sophie motivate others. Share her story.

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.