Episode #41: Gunnar Esiason

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This is a listener favorite from season two. Check out the show notes from episode #24 with Gunnar Esiason that originally aired on January 24, 2019 here. Stay tuned for a new season of Made Visible, starting next week!

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Gunnar Esiason is a successful 27-year-old young man living with cystic fibrosis. After graduating from Boston College in 2013, he is now a program director, patient advocate and board member at the Boomer Esiason Foundation, the charity his parents started upon learning of his cystic fibrosis diagnosis. Gunnar is also a co-host of Breathe In: A Cystic Fibrosis Podcast, a writer and the head coach of his high school alma mater’s varsity ice hockey team. Above all else, Gunnar believes it’s important for people living with chronic illness to feel empowered to advocate themselves as equal individuals. He lives in New York.

Gunnar Esiason believes cystic fibrosis drug development is in its golden age, and that’s good news for people like him. Gunnar was diagnosed with cystic fibrosis (CF) at age two, and since then, he’s relied on an intensive daily treatment regimen to manage his symptoms. Despite a strong support network and discipline around his treatments, there have been some inevitable bumps in the road; just ask his dad, Boomer, who had to chase his son through the halls of a hospital the day Gunnar was scheduled to get his first PICC line. (As Boomer is the former quarterback for the Cincinnati Bengals, the scene wasn’t exactly what you’d call low-profile.) On today’s episode, Gunnar and I talk about why he feels a sense of promise around CF research and drug development, how he copes with his condition using humor and transparency, and his two jobs (advocacy and ice hockey), both of which he loves. Oh, and he’s a podcast host too!

 
“My motivation was always my health. If I was healthy, I could do whatever I wanted.”
 

Here are some things that Gunnar and I chatted about:

  • His negative misdiagnosis for cystic fibrosis (CF) at birth, and his positive diagnosis at age two

  • How his parents’ early attitudes towards CF enabled him to be more independent as an adult

  • The hospital trip in first grade that prompted an “aha” moment (and also a good bit of panic)

  • The time-consuming medication regimen he’s been on every day for the past 25 years

  • How his parents taught him discipline around treatments, even including his friends in his care

  • Using his vest and nebulizer in front of a room full of strangers on the first night of college

  • What an average day looks like for him (and why it includes taking in 5,000 calories)

  • His experience coaching high school ice hockey, and why he loves the escape it provides

  • Why he chose to dedicate his time to the Boomer Esiason Foundation after graduating college

  • The robust drug development in the CF world, thanks in part to the Cystic Fibrosis Foundation

  • Why he feels that current research is very promising for CF patients — life-changing, even

  • His podcast, Breathe In, and the reason he’s never met his fellow co-hosts in person

  • Using his sense of humor and tendency toward transparency to help manage his illness

 
“I look like an otherwise healthy person, but I am dealing with a demon inside me.”

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Episode #42: Christopher Hooton
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Episode #40: Sophia Saad