Unmasking hope: How a cystic fibrosis warrior has changed outlook for future

GRAND RAPIDS, Mich. (WOOD) — When Brandon Erhart graduated from Rockford High School in 2008, he was staring his own mortality square in the eye. With sights set on college and a career, Erhart grappled with the statistical realities he lived with.

“I used to say, ‘Don’t put me in a box,’” Erhart said. “Everyone’s genes are different. So my disease is going to affect me like me.”

Erhart was born with the degenerative disease cystic fibrosis. It is an inherited condition in which the lungs and digestive tract are coated with a thick, sticky mucus. There is no cure.

For those who live with it, like Erhart, the most common treatment has been infection control.

“It was a lot of coughing. It was sleepless nights because I couldn’t breathe. It was a cold that should have lasted a week (but) turned into a month and a half,” Erhart said. “It was inhaled antibiotic, it was sometimes injections. Patients who were in and out of the hospital a lot would have (peripherally inserted central catheter) lines put in or a port because they were in so frequently that they would always need that administration of drugs.

“It was chest percussion therapy where they would literally sit in a chair like this and be shaken as a way to get that mucus out,” he continued.

There are many complications that come from living with CF. Erhart was determined to not let any of them limit his life. During a sixth grade science project on genetic disorders, he chose CF, mostly because he knew a lot about it and thought it would be easy. What he found was curiosity and questions from classmates.

“I was sitting in the hallway one day and someone asked me this question: (How does this make you feel?) And I said, ‘It’s not something you can allow to define you because then it’s already won,’” Erhart said “If you allow yourself to identify with that, it’s already beaten you. And I think I’ve just carried that.”

For a long time, Erhart tried to keep the story of his disease concealed. He said he didn’t want the attention or to be treated differently. He set out to define his life on his terms. He said he chose gratitude and viewed life as a gift, facing the uncertainty of the future with an appreciation for the present.

“I always felt like I had some certainty because I was a little bit above the expectation, I was a little bit above the expected health care trajectory of somebody with cystic fibrosis,” Erhart said. “But even still, there is that element of uncertainty, there was an element of unknown because I didn’t know how it was going to progress.”

Despite the outward effort to defy the implications of the disease, CF was shaping Erhart. He got involved in causes for the community, volunteering with organizations like the Cystic Fibrosis Foundation and Friends & Families of Cystic Fibrosis.

“They do amazing things in this community,” Erhart said of the CF Foundation. “They’re obviously raising funds to support research and new therapies. When you talk about boots on the ground, what’s happening in West Michigan, it’s Friends and Family. And it is a tight community.”

FFCF raises money for families affected by the disease and believes that those families and children should have something to smile and be happy about. It delivers care packages to homes or hospitals. Wherever a West Michigan CF patient needs a pick-me-up, FFCF arranges to be there.

For more than two decades, FFCF held an annual fundraiser, BID for Bachelors and Bachelorettes. Just days after the final BID, in March 2020, the CF community finally received a breakthrough: Trikafta, a Food and Drug Administration-approved medication offering new possibilities for CF patients.

“As soon as I got on that drug, it was a week,” Erhart recalls. “I’ll never forget this, I was getting in my car and I yawn, just like that and that sense of relief that you get, when you successfully yawn, I felt that for probably the first time in a long time.”

Erhart calls the medication foolproof. He takes it twice a day, three pills total. The medicine is only for a specific strain of CF and experts estimate there are more than 1,000 mutations. However, the one the medicine treats represents about 90% of all those with the disease.

“What the drug does is a really good job of addressing the underlying cause. And with that comes improved lung function, improved digestive symptoms, improved weight gain,” Erhart said. “I feel like I’m in a new season of life, where I have a little bit more time to dedicate towards being an advocate.”

“There’s another good friend of mine, he and his wife, they’ve got little kids and their son, who I think is 7, has cystic fibrosis too. And he just has started to get on to these modulators at 7, I had to wait till I was 30,” Erhart continued. “And so when you think about the long game, (doctors’) long game that they’re playing with a 7-year-old is tangibly different than the long game that I was playing at 7. I was hoping to get to high school or maybe even into college.”

When Erhart graduated high school, he says the life expectancy for someone with CF was 26. He’s now 33 and has a renewed hope for what the future looks like, thanks to the new medicine he takes.

“The life expectancy of people with the disease now is 40 years older than what it was when I graduated high school,” Erhart said. “And so to be able to tell the story now and to attach it to this miracle drug that’s having an impact on so many people, people that now have longevity, patients that get a chance to get married, they get a chance to buy a house, they get a chance to have kids. We were just talking about our friend who also has CF, she just had a baby. There’s hope there. There’s hope behind that.”

This weekend, Erhart will be at an event put on by FFCF, the 2024 Masquerade Ball. He’s back to telling his story loudly and will be a part of the continued work the nonprofit does to raise money and awareness for cystic fibrosis support.

There is still no cure for the disease, but new statistical realities have Erhart excited to think about the future.

“It gave me personally a little bit of stability. It meant that I was gonna have a retirement, potentially,” Erhart said  “Just some of the things that the big question marks in life that I had to wrestle with, like maybe I’ll be on Medicare someday. Maybe I’ll buy a house, get married and have kids, start a family. And there’s all sorts of room for those things to change as life goes on, but that that’s the part for me that was beautiful, was that it made me even more like everybody else.”

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