Works by the CF Community: Summer 2022

We’re highlighting six creators who are helping raise awareness of cystic fibrosis. By sharing parts of their life with CF on paper or on screen, they’re voicing the variety of ways that people experience the disease.

| 8 min read
Hannah-Avery-Headshot
Hannah Avery
A woman and man sitting on a couch reading a book together.
Still from the film Never Better.
A still from Julianne's film, Never Better

Julianne Fox
Writer/Director, Never Better

Never Better is the funny, anxious, and ultimately hopeful story of Terese (Sofia Bryant), a recent college grad with cystic fibrosis who is quarantining alone in the summer of 2020. She fights her boredom with beer, weed, and an unstoppable internal dialogue. When her self-interested roommate, Amanda, returns and fails to practice safe social distancing, Terese finds that boredom may be the least of her worries. Tensions rise as Amanda is unable to meet Terese's standard of safety, and Terese struggles to communicate the gravity of her chronic illness, which puts her at high risk for COVID-19.

 


 

Krystal Paigo

Krystal Paigo
Author, Karly & Me Growing Together With 65 Roses

My name is Krystal Paigo and I was born on August 2, 1983 in Florida at Hialeah Hospital; seven months later I was diagnosed with cystic fibrosis. On the evening — or some might say, early morning — of October 2015 at 2 a.m., I felt compelled to write a children’s book about cystic fibrosis. It was like any other night in the hospital. I couldn’t sleep and was repeatedly woken up by the nursing staff. I decided I wanted to write a book to illustrate the importance of keeping a daily routine of activities, aerosol treatments, and medications for children with cystic fibrosis and their parents, while including a big part of my own life in the book as well. 

I wrote my book — Karly & Me Growing Together With 65 Roses — with the hope of helping the CF community understand the benefits of what a routine with CF medications can do to help children sustain good CF health. The book is about a little girl named Karly who is diagnosed with cystic fibrosis and the adventures that she and her lovable dog, Ali, go through — learning and growing with new tasks and medications that she must do daily. I believe when I was younger that my consistent good health can be attributed to me submerging myself in activities and being diligent with my treatments.

I will be continuing Karly’s journey with cystic fibrosis and all the ups and downs she goes through with the hope of educating and spreading more awareness. 


 

Heather McCoy

Heather McCoy
Writer, Between the Salty Lines

Growing up with cystic fibrosis I wish there was someone I could relate to. Once I connected to more people in the CF community in my teenage years, I realized that a lot of us shared that same desire. When I went for my first double-lung transplant in 2012 at age 20, I knew only a patient who had been through it could give me advice or hear my concerns in a way a no health care provider could. I had a support system of other CF patients through pulmonary rehab at Duke, where I received my transplant. Without them, my journey would have been much harder.

My best friend, who was a double-lung transplant recipient, mentioned to me one day I should write a book so others could know what we felt. By the time I went for a second double-lung transplant after being in chronic rejection in 2020 at age 28, I decided I wanted to offer my perspective to help others understand CF and organ donation better. I wrote Between the Salty Lines, which explains what it means to live with a chronic illness and defy the odds. I have become that voice someone can look to by offering my experience. I want others to see a success story. Through this book I hope to bring awareness to both topics. You can follow me on Instagram.


 

Maryanne O'Hara

Maryanne O’Hara 
Author, Little Matches

I lost Caitlin, my beloved only child, at the end of 2016 following a lung transplant that attracted nationwide attention. The transplant was supposed to be Caitlin’s chance for renewed, adult independence — she wanted to study for a master’s in public health and marry in Italy — but events spiraled desperately out of control.

Little Matches is partly my reckoning with the loss of her, the shock, the depths of my grief. But, I also sought to elevate my experience to universal reflections on meaning, purpose, and the life of the soul. I ask the big life questions: Where is she? Is she? Is there more to life than this life? Does consciousness survive death? Does my existence have any real purpose? Does anyone’s?

Caitlin, too, speaks from within the pages of Little Matches, via emails, blog posts, and text messages she wrote to share her musings on living and chronic illness, and the difficulties and joys of being human. She once wrote: “THE MIRACLE OF HUMAN BEINGS IS THAT WE ARE ALL ABLE TO GO ON LIVING DESPITE THE CERTAINTY THAT WE WILL DIE. I kind of love that.”

HarperCollins published Little Matches last year and now it is out in paperback. Our story has been featured in The New York Times, TIME Magazine, The Boston Globe, Psychology Today, and Little Matches is a People Magazine Book of the Week. I can’t tell you how much I love hearing from readers who are comforted and inspired by Caitlin.


 

Maria James

Maria James
Author, Caroline Goes to Kindergarten

I am a 35-year-old cystic fibrosis thriver living in Minneapolis. Growing up in Duluth, my family did not let CF stop them from activities such as hiking, camping, skiing, or cross-country road trips — all while not missing a beat with my CF care. My family’s approach was to always be transparent and open to conversations about my CF, which gave me the confidence to own my condition and strive independently in the world. My resiliency and creative thinking have allowed me to travel abroad, move across the country, excel in my career, and face any challenge with an open mind and positive attitude.

I have always dreamed of using my experiences with CF to help others but was not sure what that looked like for myself. As I have watched my nieces learn about my CF, they inspired me to share my experiences through children’s books. Caroline Goes to Kindergarten is based on my parent’s approach to helping calm my nerves about going to a new school by sharing with and educating the class about my differences. My goal is to create a series of books about CF while looking for ways to include other physical, cognitive, or health-related differences in my stories, so we can all learn with the same care and curiosity as my nieces. 


 

Lauren-Luteran-Headshot

Lauren Luteran
Author, Breathing Easy .. Through 65 Roses”

Breathing Easy .. Through 65 Roses is a memoir of my life with cystic fibrosis. It’s about perseverance, faith, and what going through this disease has done to make me the person I am today. I believe in miracles and have prayed my whole life for something — not to cure me, but to fuel my soul to ignite my life’s purpose. I found that throughout my journey with CF I discovered a deep-rooted passion for dance, as well as for giving back to others and leading a life I’m so beyond proud of. My hope is for others to look in the mirror and be their own biggest inspiration, which is something I’ve had to unlock within my own self. I’m humbled to share my story and hope that it feels personable and inspiring. As always, breathe easy …

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Hannah is a senior community engagement specialist at the Cystic Fibrosis Foundation. In her role, Hannah engages with the CF community to develop content to support the Foundation's programs and manages the editorial calendar for the CF Community Blog. She has a bachelor's degree in public relations with minors in professional writing and business leadership from Virginia Tech. Hannah lives in Washington, D.C., and in her spare time, she enjoys trail running, reading with a cup of coffee, and spending time with her friends and family.

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