Having Cystic Fibrosis Changes Everything, And This Woman’s Life Sheds Light On How That Looks

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BY Lara Rutherford-Morrison

In many ways, Caleigh Haber is your typical, fun-loving 24-year-old: She loves Beyoncé, Ellen DeGeneres, sushi, and her dog, London. She’s an amateur painter and a trained pastry chef, and she has an infectious laugh. She’s also an adult living with cystic fibrosis.

Cystic fibrosis (CF) is a genetic disease that affects the lungs and digestive system. CF causes people to produce unusually thick, sticky mucus that disrupts proper lung and digestive function. It’s a serious, life-threatening illness; when Caleigh was diagnosed with the disease on the day she was born, she was given a life expectancy of less than 18 years. Now well past that point, she’s still fighting strong as she waits for the double lung transplant that could save her life. In a recent video, Caleigh talks frankly about what it’s like to live with an illness that requires her to have supplemental oxygen, a feeding tube, and breathing treatments four times a day. However, she also discusses the things that make her happy—a list that ranges from the Giants to her dog to her medical team. Tremendously likable, Caleigh is funny, warm, and charismatic. Despite the very real difficulties she faces, Caleigh’s love for life is palpable. You’ll find yourself instantly rooting for her.

Caleigh’s story is part of “The Happiness Stories,” a video series from filmmaker Ron Parida that documents the lives of people living with chronic illnesses. As The Happiness Stories YouTube channel suggests, the series is focused on both raising awareness of these illnesses and spreading joy. Parida writes, “Happiness is a CHOICE we all have, and the goal of this project is to show this through mini documentaries in the hopes of inspiring.”

At the end of the video, Parida reminds viewers that Caleigh is on a list for a double lung transplant for over a year, as she waits for a suitable donor. This video is a perfect reminder of why organ donation is so important, and of why we all should sign up. As Parida asks, when it comes to organ donation, “WHY NOT?” Organ donation costs the donor nothing and can save many lives. Find out more about how to sign up to donate here, and learn more about Caleigh Haber and her fight against CF at Fight2Breathe.

 

“Salty Girls” Photo Series Features Women With Cystic Fibrosis Being Their Beautiful, Badass Selves — PHOTOS

Since being diagnosed with cystic fibrosis (CF) seven years ago, Canadian photographer Ian Pettigrew has used his medium to bring greater awareness to the many faces of adults living with the disease. His latest project “Salty Girls” is a photo series documenting the many ways that women living with cystic fibrosis are beautiful, powerful, and hella sexy. CF is a genetic disease that currently affects 70,000 people worldwide. The life-threatening illness causes the body to produce abnormally thick, sticky mucus that interferes with normal lung and digestive function. (People diagnosed with CF also have unusually salty sweat, a symptom that gave the Salty Girls series its name.)

The Salty Girls project is an offshoot of another project by Pettigrew called “JUST BREATHE: Adults with Cystic Fibrosis,” which aims to raise awareness of the many adults who live with CF, a condition that was once largely associated with children. On the Salty Girls Facebook page, Pettigrew explains,

While I was doing the [JUST BREATHE] portrait project, I ended up photographing a disproportionate number of girls to guys (i’m still wondering what the real reason is for this). Anyways, most of the women involved were roughly between the ages of 20-40, typical for an adult with CF I guess. Then someone actually said one day, “This project is just turning out to be a bunch of hot chicks with CF”.

Thus the idea of a side project dedicated to showing how beautiful those fighting CF truly are.

Pettigrew cites recent viral photos as inspiration, writing,

I also saw a girl in the news who was a model, posing in her bikini with a colostomy bag as she has Crohn’s Disease, and shortly after that the Canadian model with the skin disease vitiligo being interviewed by Tyra Banks. I just thought well, it’s time for a model with CF! I know what these woman go through on a daily basis; everyday it’s a struggle living with CF. And, to the uninformed, it is the invisible fatal disease.

The resulting photos feature more than 60 women with CF proudly showing off their bodies, scars and all. On Pettigrew’s website, one unnamed model describes the experience of being photographed as empowering, saying,

It took a huge amount of courage for me to be able to expose my body for Salty Girls. When I look at my body, all I see are my scars: from meconium ileus, transplant, chest tubes, g tubes, picc lines, to self-harm scars. I pick out every single thing I find wrong with my body, and compare it with other women’s bodies. This led to countless of body image issues. […] And today, I take a stance… I will learn to appreciate, love, and nurture my body the way it should be.

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