Cystic fibrosis warrior Lauren Luteran brilliantly shares how time and health reveal what matters most in life

Lauren Luteran was five months old when her parents noticed that she was not developing normally. Doctors diagnosed her with cystic fibrosis (CF). At 19-years old she is determined to not let her diagnosis get in the way of what she wants to achieve in life.

Lauren’s pediatrician initially thought she had parasites. There was a problem though—she showed no signs of improvement when her doctor placed her on anti-parasitic medication.

“My parents went back to this pediatrician and he was like, ‘Alright, we’ll test her for something that is super rare’.”

At five months old, Lauren was not gaining weight but she was moving a lot.

“When the test results came back positive for CF, my parents thought, ‘What is this’?”

Lauren is one of the estimated 30,000 Americans living with CF.

The condition is caused by inheriting a mutated Cystic Fibrosis Transmembrane conductance Regulator (CFTR) gene. In people without CF, the gene makes a protein that controls the movement of sodium and chloride—the components of salt. We need this ingredient so water knows where to move to in the body.

Scientifically speaking, water is comprised of two hydrogen atoms attached to oxygen. The bond between hydrogen and oxygen is incredibly strong but the molecule can also adapt to various circumstances.

Just like water, when you are put into a new challenging situation you have the ability to change. Rather than waiting for everything around you to change, you can be the one to adjust instead. Problems will constantly arise in life, but you must stay true to who you are and your values.

People with the condition have difficulty regulating sufficient amounts of water in their body causing their mucus to become thick which impairs their breathing.

Lauren has the most common type of CF—DeltaF508.

Both Lauren and her parents began learning more about CF over the years through their own research and with every doctors appointment.

“I feel like I was a doctor for myself when I was like 10. Because you learn so much about it,” she says.

She is now at an age where she can attend appointments by herself and with that comes greater expectations from her doctor’s to be responsible with her treatments.

“They’re like, what’s this? What’s this? They quiz to make me sure you know what you’re doing and what it’s for.”

As soon as Lauren wakes up she puts on her specialized vest. It provides quick vibrations that loosen the mucus in her lungs and makes it easier to cough out. At the same time, she uses her nebulizer. The device delivers medications in the form of a mist which then makes it easier to reach her lungs.

All the medications she needs are organized on her “med cart.”

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Airway clearance therapy with the vest and nebulizaation. Photo credit: Lauren Luteran

“Those treatments are very time consuming, let me tell you that. They’re kind of a pain. I do something productive while I’m doing them to pass time.”

She sees the end result and never wants to go down that path of having her health deteriorate. “Always choose the right thing,” she says.

Aside from medications, there has been a tonne of research over the years into the beneficial effects of exercise on CF.

Exercise activates nerve receptor pathways, namely adrenergic and purinergic, in the body. These pathways help regulate the flow of salts and ions in airways and sweat glands. The result is improved aerobic fitness and an improved ability to cough up mucus.

Since the age of five, Lauren had developed a love for dance ever since her parents enrolled her into a class. They never pushed her to do something she didn’t enjoy.

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Arabesque in a live performance. Photo credit: Lauren Luteran

“My doctors kind of pushed me to do some sort of physical activity because having CF, you need something to kind of keep you active and in the best shape possible,” says Lauren.

In 2015, she was granted the opportunity from Make A Wish Foundation to learn from Travis Wall, a former So You Think You Can Dance contestant and Emmy award winning choreographer. He choreographed a contemporary routine for her to the song Marathon (In Roses) by Gem Club.

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Travis Wall and Lauren embrace. Photo credit: Lauren Luteran

It was that song she used for her So You Think You Can Dance audition. She still loved the choreography but tweaked some of the moves.

“It was just going to be called Marathon because it’s kind of a relapse in my life and how my life is kind of a marathon, a chasing to finish to the end, trying to get to the end of whatever time I have.”

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SYTYCD season 16 audition. Photo credit: Lauren Luteran

In the past few years alone there have been numerous CF warriors that have lost their lives.

YouTuber Claire Wineland passed away last year at the age of 21 after receiving a lung transplant.

 She is the founder of the Claire’s Place Foundation, a charity aimed at providing emotional and financial support to families who have a loved one with CF.

Last June the foundation hosted the first ever Clarity Ball in honor of their founder. Lauren was one of the attendees at the event.

“A couple of weeks ago I flew to LA for this gala for a person that passed away with cystic fibrosis.”

Haley Lu Richardson, actress, and Justin Baldoni, director, of Five Feet Apart also attended the event.

“I got the opportunity and chance to meet them and I told them that I loved the movie,” she says. “I think everything was beautifully scripted.”

Haley recognized Lauren immediately.

“She actually direct messaged me and told me how much she loved the show [SYTYCD] and she saw me on it!”

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Lauren (L) and Haley Lu Richardson (R) meet. Photo credit: Lauren Luteran

Before there was ever a movie like Five Feet Apart, Lauren thought people would shy away from her and avoid inviting her to social events in fear of them “catching something.”

During the 1970s most children with CF never made it through elementary school.

In 2019, the average life expectancy of a female in the U.S. with CF is 37.5 years. However, with continued research into new treatments, life expectancy is increasing. In fact, longevity amongst the CF community is improving at a faster rate than the general U.S. population, according to a 2014 study published in the Journal of Cystic Fibrosis.

“I mean there’s not really a way to handle the fact that I’m going to die because I mean, at the end of the day everyone will,” says Lauren. “I try to live every day not like it’s my last, because I think that’s kind of extreme. I try to live every day like a new experience.”

Time and health are two of our most precious assets. They reveal to us what really matters in life.

“I think about living because dying is the easy part, living’s the hard part” she tells me.

tweet-graphic-transTweet: “I’m trying to take it day by day, do things that fulfil me, inspire me, and whatever comes is going to come, and what’s meant to be is meant to be.” — Lauren Luteran, cystic fibrosis warrior and dancer.

Lauren has goals beyond dancing. She has worked with her mentor to uncover what goals she wants to achieve in life.

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Lauren (L) and her mentor (R). Photo credit: Lauren Luteran

“One of my goals and my biggest dreams is actually to write a book. And I’ve been thinking about it for a very long time and I just haven’t had the time to sit down and write it. But I want to write a memoir. I want to create a non-profit organization with my mentor.”

If Lauren were to ever make a movie about her life, she already knows who she wants to star as her.

“I mean Haley, obviously, would have been great because she’s literally the same person as me. She’s also a dancer, which is like, that’s really cool. I’m also a dancer. So, I thought she would actually be a perfect fit. I know she already starred in a movie, but she strikes me as another form of me, which is kind of crazy, but also kind of cool.”

The hope is that as research advances, one day CF will no longer stand for cystic fibrosis but ‘cure found.’

All the little decisions and challenges ultimately make and shape you into a person that is constantly learning and growing. Your happiness is not about struggling to the top of the mountain nor wandering aimlessly in the valley but enjoying the view on the climb to the peak.

Afterthoughts

What is your biggest dream in life? Let us know in the comments down below.

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Cystic Fibrosis Foundation (USA)

Cystic Fibrosis Australia

Claire’s Place Foundation

Lea Marie Faraone Foundation

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