Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
This year, I'm planning a big, beautiful queer wedding with my fiancée, Ali. Even though I felt conflicted about bringing Ali into a life with CF, she stayed by my side through some of the hardest challenges I've ever faced.
June 11, 2021
Dealing With Ignorance When You Have CF
My Sobriety Journey
On Sept. 30, 2015, I was playing a show at Sweetwater Music Hall, opening for a band called T Sisters -- a beautiful trio of tall blondes who sing in harmony and play the banjo, mandolin, guitar, and bass like nobody's business. I remember the exact date
because it was the night I met Ali. She was in the audience that night and introduced herself after my set. We exchanged numbers and agreed to meet for drinks or dinner later that week. Thinking about it the next day, I realized I didn't know what
I had just agreed to. Was this a date? Or was she just a young woman in Marin County, Calif. looking for some friends? I assumed the latter and decided that I would figure it out when we met.
Olivia (left) with her fiancée, Ali.
We met at a German beer haus in downtown Fairfax. We got to talking, and as we were sharing our interests and hobbies, I sized her up. I still wasn't sure if this actually was a date. Ali had dark blonde hair that she wore tied up. She had very
tiny and straight white teeth, a dash of freckles, and the biggest cornflower blue eyes I'd ever seen. I looked at her outfit: a pair of high-top sneakers, tight jeans, a plain black t-shirt.
And then I saw her pearls. She wore big pearl earrings that were the size of the first joint of my pinky finger. They threw me off. Everything else about the night was pointing toward "date.” But, could a lesbian wear pearls like that? I doubted the possibility
enough that by the end of the night I had convinced myself that she was straight, and just looking to be friends. It wasn't until the second time we met that I learned a lesbian can, in fact, wear pearls and we were, in fact, dating.
We didn't go more than two days without seeing each other in those first few months. I was new to the whole “dating a girl” thing -- I'd had two boyfriends in my life and had only just started exploring my sexuality. All I knew was that it was exciting,
a little scary, and I wanted to keep seeing her.
I never had to tell Ali that I had CF. She found out before she met me from reading it in my bio on the Sweetwater website. I am grateful that I never had to break the news to her -- she never had to readjust her definition of me from a normal 21-year-old,
to a 21-year-old with a life-threatening illness. Of course, knowing that I have cystic fibrosis and understanding what that actually means, are completely different things.
After almost six years, Ali is still learning what it means to love someone with CF. Heck, I'm still learning what it means to have CF 27 years in. It's a constant process of learning, thinking you have a handle on it, being bulldozed by a new reality,
and then learning again.
So, we started with the little things. She watched me do my respiratory treatments and I described what each one was for. I squeezed the liquid medication from the plastic vial into my nebulizer cup.
“What's that one?” Ali asked.
“It's actually just salt water,” I explained. “It draws moisture into my lungs to help me cough out the mucus that's stuck in there. I breathe this one in twice a day, but more often when I'm sick.” She nodded and watched my every move carefully.
As I was doing my treatments, I started coughing. This was normal for me, but to someone who isn't familiar with a “CFer” cough, it can sound frightening. There was a tightness in
my throat and a deep rumble from the bottom of my lungs. I couldn't stop coughing. My face was red and sweaty, my veins were popping out of my neck -- I probably looked like a constipated gorilla. The last thing I wanted was for Ali to see me like
“I'm fine, I'm okay!” I spewed between violent spasms, trying to reassure her that I wasn't dying. After an excruciating few minutes, the coughing fit was over. I took a few sips of water and looked at Ali. She looked straight at me with a calm smile,
like nothing the least bit worrisome had just happened.
“So do you want to play checkers?” She asked. I smiled in amazement and relief. “Absolutely.”
In those first few months, Ali walked the perfect line between showing interest and not prying. She encouraged me to share, but didn't force it. I was awestruck at how on board she was with my whole situation. I felt conflicted because I wanted to share
my reality with her and I wanted her to understand, but I also wanted to save her from having to live with CF too.
I would never wish cystic fibrosis, or any chronic illness for that matter, on anyone. So why would I ask Ali, someone I respect and admire and love, to sacrifice her unblemished beautiful life and climb her way down into the Land of the Sick with me?
During one of my hospital stays after about four months together, Ali came to visit equipped with Chinese food and card games. Her tight high ponytail fell across her shoulders as she rummaged through her bag for the paper cups and soda. We played Gin
Rummy and ate chow-mein and stole kisses between the nurse's comings and goings. After my last respiratory treatment of the night, I turned to face her.
“How can you still want to be with me after seeing all of this?”
She cupped my face in her hands, and looked at me without blinking. “Because I love you, Olivia, and this is part of what makes you, you,” she responded without hesitation. I told her she didn't know what she was getting herself into. I told her she was
going to change her mind once it got hard. I told her she couldn't possibly comprehend how achingly hard it would be. But, she was steadfast and stubborn. I loved her for it.
We both lived up to our word. Ali told me she wouldn't let CF scare her away and it didn't. I told Ali that CF would get harder, and it did. My health started to decline steadily in the fall of 2018, and nothing I did made it better. I was on IV antibiotics almost every month, doing treatments three to four times a day, losing weight no matter how much I ate, and I was exhausted all the time.
Ali stayed by my side when I eventually got evaluated for lung transplant, when our future was uncertain and scary, when I was angry and sick. And, she stayed with me when I finally
started Trikafta® on Sept. 30, 2019 -- our four-year anniversary. As is the case with many people who have had success while on Trikafta, my life
My cough all but disappeared, my personality that had been dampened by illness came back full force, and Ali and I started planning our future together. We are currently planning a big, beautiful queer wedding for this September, and we are so grateful
to be able to celebrate our love and our health.
After all this time with her by my side, I've finally stopped feeling guilty about giving Ali a life with CF. Our life is like a big tapestry, woven with the threads of our experiences, passions, pasts, and hopes for the future. It's woven together so
tightly that you can't tell whose thread is whose anymore -- it's just one thing now, one life. CF will always be a part of the tapestry, but I know that whatever comes next, we will face it together.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Olivia is a singer, songwriter, aspiring author, and public speaker. She was diagnosed with cystic fibrosis at 17 months old. She lives in Berkeley, Calif. with her fiancée, Ali, and their pug/chihuahua mix, Rizzo. She stays active in the CF community
by speaking at CF Foundation events, volunteering with the CF Peer Connect program as a mentor, sitting on the CF Patient Advisory Council at Stanford, and sharing her story on social media. You can find her on Instagram.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails