A Battle Inside: How Sophia Cerniglia Continues to Fight with Cystic Fibrosis and Bring Awareness to an Incurable Disease

A Battle Inside: How Sophia Cerniglia Continues to Fight with Cystic Fibrosis and Bring Awareness to an Incurable Disease

 

There she is, getting out of her car with her hands full of art supplies and a banner, ready for another day, another event to bring awareness to a disease she knows all too well; Cystic Fibrosis.

Sophia is covered in tattoos on a body that carries so much wisdom and hope for those who share her similar obstacles. Her bright smile hides the struggles of a young child diagnosed with an incurable disease at the age of seven.  The first thing one notices about Sophia is her tattoos, but it’s quickly followed by her smile, welcoming and overflowing with energy. You wouldn’t know that she was diagnosed with an incurable disease at such a young age, that she has battled with depression, or even that as I’m looking at her she has lung function of only 40% (Which is actually good for Sophia, I would later learn).

I talked to Sophia a few times on Instagram, and she had supported our brand BLoFISH since its inception, but it wasn’t until last year that we started talking about collaborating. After learning more about Cystic Fibrosis, I realized how prevalent the disease is: there are more than 30,000 people in the United States living with CF. It’s a number that doesn’t overwhelm until you realize the average life expectancy for someone with CF is nearly half the typical life expectancy.  Many of the people with Cystic Fibrosis are diagnosed under the age of two, creating a huge financial hardship on a family. Her foundation, Breathing Becomes Effortless, aims to ease those hardships. It was a natural fit as an organization we want to support; grassroots and making an impact on the ground with the people who need it most.

What I didn’t realize while I was reading statistics about the disease was the weight it has on the people living with it.  Reading statistics are one thing, but it is such an eye opening experience when the effects of this disease are standing in front of you, is another level of realization.

Helping Sophia unpack for her stay in Louisville to help us with the launch and a photoshoot, I realized the effects of the disease were right in front of me, or more specifically in my hands. Not only did she have to worry about the disease itself, but also the equipment and supplies she had to take with her nearly everywhere. She proceeded to take a treatment, (which basically is breathing in antibiotics and other things to help improve her lung function). The treatment lasted about 20 minutes, but I couldn’t help but think how often she had to plan her days around her treatments.  I saw how it affected Sophia physically. Now I began to wonder how it affected her mentally, something I would learn about in the upcoming days.

Being told at the age of 24 that you need a lung transplant seems unimaginable to me, yet this happens regularly to people with CF. Often a lung transplant is the only way to stay alive, (even though many of transplants only last five years). Aware of what others with CF go through with a transplant, she wanted another option.  Weighing everything from taking her own life, (you can hear Sophia talk explain more about her battles with mental illness on our podcast that will be released next week,) to alternative treatments, Sophia decided she was going to battle the disease with two things: food and exercise.

Despite the doctors and nurses urging her that this was a bad idea, Sophia pushed on. She signed up to compete in a bodybuilding contest, an event that requires strict discipline and awareness of one’s body. Sophia stuck it out, following her strict diet and workout regimen even while she was admitted to the hospital just weeks before her show.

Her mind is tough and her body is resilient. This is how I can best describe Sophia from the time I spent with her. Despite this, these are nowhere near the two things I admire most about her. Her body will always be fighting this disease, and her mind will always be weighing her options on what to do next, but what Sophia can control, is the difference she can make by telling her story. Being open about her mental health battles, her struggle with coming out not only about CF, but coming out as gay as well, and her daily battle with staying alive is Sophia’s gift to this world.  

As I’m typing this, our good friend Sophia has been admitted to the hospital again, a place she tells me is all too familiar. It reminded me of the feeling I had when she was leaving Louisville. I thought I was meeting with a person living with a debilitating disease, but I was wrong. I met someone who knew her life could be an example to everyone, not just those with CF. As long as Sophia can take another breath, she will be fighting to raise awareness, a lesson all of us should take in.  

Sophia’s story is not just one of illness, but one of resilience, hope, and determination to leave the world a better place than what she found - hopefully a world where folks living with CF can look forward to long, bright futures without worrying about how to pay their bills while in the hospital. Just breathe.


For more information on Cystic Fibrosis click HERE.

 




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