- Persistent coughing, at times with phlegm
- Frequent lung infections, such as pneumonia or bronchitis
- Wheezing or shortness of breath
- Poor growth or poor weight gain in spite of a good appetite
- Chronic sinus infections
Liz Shuman Peri shocked a friend 13 years ago when she announced, “I’m going to run a half marathon.”
Racing for 13.1 miles is an impressive goal for anyone, but Peri suffers from cystic fibrosis, an inherited disease that results in recurrent lung infections, and decreases functions of other organs. There is no cure. Peri had been hospitalized numerous times and needed a daily regimen of breathing treatments and medications to keep her healthy. So her friend’s response was blunt: “No, you’re not.”
But there was no stopping Peri, who coined the term, “healthy sick,” to describe herself. Cystic fibrosis may limit her in some ways, but she remains as active as possible, even if it means running with a feeding tube attached to her or stopping at a stranger’s house to ask for orange juice if her sugar drops from her cystic fibrosis-related diabetes.
Training for that first half marathon not only improved her health, it set off a cascade of events, including the creation of a nonprofit organization, OutRUN 38, Inc., which has inspired people around the world to run—and raise awareness about cystic fibrosis.
Exercise can boost health for people with cystic fibrosis
Meanwhile, Yale Medicine, where Peri, 40, has been a patient since she was a child, has long embraced the idea of using exercise as a way to promote airway clearance, one of the fundamentals of cystic fibrosis care. Now, OutRUN 38 is helping the Adult Cystic Fibrosis Program, which started in 2004, further support the promotion of exercise for patients.
On Sept. 25, OutRUN 38 presented a $20,000 check to Yale Medicine for the second year in a row. Jonathan Koff, MD, director of the Adult Cystic Fibrosis Program, puts the money towards the salary of a physical therapist, which Peri wholeheartedly endorses.
“It’s great to have someone talk to you about how exercise will be important to you, and she helps you figure out the best time to fit it in,” says Peri, a clinical social worker.
When Peri was diagnosed with cystic fibrosis at age 7, the life expectancy for someone with the disease was age 12. It was rare to meet an adult with cystic fibrosis. But Peri, like thousands of others, has benefited from medical advances that prolong their lives. Today, the median predicted survival age is 40. Many people with cystic fibrosis live well into middle age.
A former gymnast and ballet dancer while growing up in Madison, Peri began running after college. She soon set her eyes on a half marathon and reaped the benefits of the 10- and 12-mile training runs. “My lung function visibly improved,” Peri says. “It was such an empowering experience, to run that far. It gave me such confidence.”
3,800 miles from friends, family and strangers
She ran several half marathons, and started to train for a full marathon. But after a 20-mile run, a few weeks before the race, she landed in the hospital.
Meanwhile, Peri’s determination had inspired her lifelong friend, Nicole Burke, to start running. Burke would write “L” on her shirt in honor of her friend when she ran races. In April 2014, Burke was training for her second marathon, and Peri was again in the hospital. Searching for a way to cheer Peri, Burke started a Facebook page where friends could post miles they ran and dedicate them to Peri.
The goal was 3,800 miles by Peri’s 38th birthday that September. Burke named the Facebook group OutRUN 38, to note the milestone, which was also then the median life expectancy for cystic fibrosis patients. Within nine days, friends, family and strangers logged 3,800 miles.
“As I was getting discharged from the hospital, I watched in real time as the miles came in,” says Peri. “Tears were streaming down my face.
Burke and Peri were featured on the "Today" show. OutRUN 38 became an incorporated nonprofit, and today boasts 6,100 “OutRunners” from more than 50 countries who have covered 500,000-plus miles.
Initially, OutRUN 38 donated money it raised just to the Cystic Fibrosis Foundation, which works to find a cure for the disease. But board members decided to include Yale, in the interest of supporting other adults striving for “healthy sick” lives. Dr. Koff honed in on the idea of funding a fulltime physical therapist, a position he did not then have.
“With adults, it’s especially important to interact with a physical therapist because they obviously no longer have recess or gym class at school, and an individual may be juggling family and work, in addition to two to three hours a day or more of medications,” he says. “And it allows a smooth transition from the Yale Medicine Pediatric Cystic Fibrosis Program, which has this physical therapy resource available to them.”
'The silver lining in every situation'
Even on a good day, Peri spends two hours using breathing treatments like her nebulizer and a vibrating vest that breaks up mucus in her chest. As a result of her cystic fibrosis, her pancreas does not work properly, which leads to nutritional deficiencies and a higher risk for cystic fibrosis-related diabetes. Peri now relies on a feeding tube at night. She has also developed resistance to some antibiotics and must be hospitalized if her condition worsens.
Despite all this, Peri, as Burke points out, “has this gift to always see the silver lining in every situation. She lives her life with this attitude to not take anything for granted.”
In addition to celebrating her 40th birthday at an OutRUN 38 gala recently, Peri got married over the summer. Her husband, Paul, has two children and she is ecstatic to jump into her new role as a stepmother.
As for OutRUN 38, Peri says it resonates far beyond the cystic fibrosis community.
“Our message has always been about outrunning the odds. Everyone has some kind of struggle in their life,” Peri says. “And for me, when I hit 30, I felt a deep mission to give back and make sure all the little CFers out there could be as happy as I was. Then OutRUN came in, and I was like, ‘Yup, I’ve got this and I know what to do.’”
Forty, Peri says, is going to be an awesome year.