Not expected to live past high school, woman runs to conquer cystic fibrosis

People deal with all kinds of challenges in life, financial setbacks, failed relationships. But what if your challenge was just staying alive? 

(You can watch a video version of this story in the player above.)

Emily Schaller is on the run. All the time. She competes in marathons and trains almost every day. In fact, right now she runs about 20 miles a week. It'll be 40 miles a week as she gets closer to the Chicago Marathon in October.

It's hard to believe that Emily has cystic fibrosis, a progressive, genetic disease, that damages the lungs and digestive system and limits the ability to breathe. She was diagnosed when she was 18 months old.

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"(In) 1983 the prognosis that they told my parents was that I probably wouldn't live long enough to graduate from high school, and median age of survival at that time for people with CF was early 20s," she said.

Emily's parents decided to treat her just like any other kid. She played outside with her brothers -- basketball, skateboarding, even football. Her active lifestyle kept her health for a while.

But as she got older with CF, her lung disease got worse. She was in the hospital several times a year for weeks at a time, and she felt she needed more than just medication and therapy. So, she decided to start running. 

"I set out to run two miles. I'm like, I'm gonna go run two miles. And I sprinted out the door and made it half a block. But I stood up and took a breath -- not a deep breath, because I couldn't -- and I continued on, block by block, stop sign, fire hydrant by fire hydrant," she said. 

Soon she was running a mile, two miles, then a 5K, then a 10K. Then she trained for a half marathon. And she realized something -- she was feeling better.

"Lung function improved to 74 percent. I was in the hospital once every 18 months, rather than two, three or four times a year. This lightbulb went off and I'm like OK, this is treatment. Running is treatment," she said.

Most CF patients can't run like Emily does. For a long time, doctors didn't even encourage them to exercise. But now they know that exercise can improve patients' quality of life. And it does a lot more.

"Exercise likely improves mucus clearance, which is a big benefit for patients with cystic fibrosis. There's some evidence that it can improve lung function," said Dr. Thomas Sisson of UM Pulmonary and Critical Care.

Even when she's not running, Emily is still making strides against CF. She established a non-profit called Rock CF to educate people about the disease and offer support to patients. In the last few years, she's raised about $2 million. She also donates running shoes to people with CF to encourage them to exercise more than 600 pairs so far.

"The people that she's worked with and the people that she has inspired to keep going when I know that they don't want to -- they're countless," said Jane Aula, a Rock CF board member.

So Emily keeps running and inspiring people wherever she goes. Doctors didn't think she'd make it to high school, but she's incredibly strong and she's a survivor.

"(I'm) 37, never healthier, never happier," she said.

New medications are coming out every day that are extending the lives of people with CF, helping them live longer than ever before. Emily's looking forward to the future -- traveling the world, even retirement. That's something CF patients never used to think about.

In the meantime, she's still standing and running, looking forward to the day when CF is finally cured.

If you have a story to tell, we'd love to hear it. Email and tell us what's keeping you Still Standing.