Miles May doesn’t let cystic fibrosis keep him from living his life. “I think the most important things is, don’t look at it as a disability, look at it as your life. Don’t let it stop you. Just make sure you stay on top of the treatment so you can do the things you want.”
Miles lives in Burley, where he grew up enjoying sports and the outdoors, including basketball, snowboarding and hunting. Now 26, he still enjoys an active, outdoor lifestyle while also managing a convenience store with 10 employees and spending time with his wife, Jessica, and their three dogs and three ferrets. In other words, he leads a busy, full life.
“I do my treatments day and night,” he says. “CF doesn’t stop me from doing a lot.”
But it wasn’t always easy to be active, Miles says. “I was a lot sicker as a child.”
Diagnosed with CF at eight years-old, Miles received his care at Primary Children’s Hospital in Salt Lake City until he was 18. He went to Primary Children’s every three months or so for a checkup and was hospitalized two or three times a year. He was sick so often and missed so much school that he fell further and further behind. Finally, he says, “I dropped out my junior year and just got my GED.”
When he turned 18, Miles was too old to receive care at a children’s hospital, so he started going to St. Luke’s Cystic Fibrosis Center of Idaho in Boise. “There was a clinical trial I wanted to be part of,” he says. The trial was for Orkambi, which was approved by the Food and Drug Administration (FDA) in 2015.
Orkambi is the first drug for CF that treats the abnormal protein at the root of the disease in nearly half the people who have it. Results of the clinical trials showed the drug successfully treats the problem protein in about 49 percent of people with CF, and that it reduces lung infections by 40 percent.
“Orkambi increased my numbers quite a bit,” Miles says.
Miles is currently taking part in a clinical trial for an anti-inflammatory drug for the lungs. And he’s excited for a new drug that is expected to be approved by the FDA any day. “They predict it will increase lung function 10 to 20 percent,” he says.