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.
I didn't know whether to cry on my surgeon's shoulder or punch him. In the end, I did neither. I looked back at him, dug deep, and said over and over again, “No. I won't sign.”
November 12, 2019
Interview: Ella Balasa Chats With CF Researcher About Phage Therapy
CF Is Predictably Unpredictable
My nurse (Cindy) and my doc had done their best to prepare me. My parents had done their best. Diagnosed with cystic fibrosis at birth, I'd been prepping for this moment for 18 years.
At a clinic visit when I was 13, my doctor told me that I would, from then on, spend half an hour of my visit alone with the care team. No parents letting me off the hook by asking the questions I wondered about. No barrier to asking the scary questions I didn't want my parents to hear about. Just me and my team.
And that was the key -- they were reminding me that it was Team Eliza. I am the captain of my own ship, and it's my job to make the final decisions. I can listen to the medical advice and remember how taking a certain medication has gone before, but in the end, it's my call whether I put that pill in my mouth. The clinic's plan to have me on my own at 13, even for only part of the visit, was a genius way to teach me my own power.
I was scared at first, and I think my parents were too. It's difficult to let go of 13 years of hard-won knowledge of your child's body, to see that she will be a woman. But, my parents talked to me about it, and we went slowly.
Five years later, I had to have bowel surgery in January of my senior year of high school. After surgery, my surgeon was clear. “Next time, tell them to give you enemas, a machine gun-grade laxative, and lots of fluids, and see if that works before they open you up.” I had spent a month recovering, missing school, and feeling awful. His advice made sense to me.
Meanwhile, my indomitable nurse Cindy had received a grant to teach self-advocacy to her teenage patients. She had booklets, lessons, and role-play exercises for me. I learned to be firm, to know my own body, and trust that knowledge. I learned to speak louder and mumble less.
Soon after, I turned 18 and started college 6 ½ hours away from my parents. It wasn't long before I started showing the signs of a bowel blockage. I was throwing up, my belly was round like a sumo wrestler, and I felt awful. I got my new college roommate to call me a cab (This was 1992, and there was no Uber!), and I went to the local hospital. I was admitted, and in came the surgeon.
“I need to do surgery, so you'll need to sign this paper,” he said. He seemed sure I would; he was used to being obeyed.
I explained, as politely as possible, that he needed to call my former surgeon, or my CF doctor. “They will tell you to give me enemas, a laxative, and lots of fluids. I will not sign to have surgery until they are consulted.”
“If I had your parents here, they would sign,” he growled. I was certain that this was not the case. I was the captain of the U.S.S. Eliza, and my parents were fully on board with that. They trusted me. My clinic team had laid that path.
He spent half an hour browbeating me, trying to guilt me, ordering me to comply. Was there a part of me that said no from stubbornness? If there was, I will only say that his certainty made me nervous. He was not a CF doctor, and he had none to advise him. I understand his anxiety to get me under his knife -- he was worried I would get desperately ill. But, he was wrong not to listen to my request that he consult my home doctor.
After he left, I cried. The nurse came in and said, “He's a very good surgeon.” She paused and said, “He doesn't have a very good bedside manner.”
He returned, trying all his blustering best to get me to sign the paper he waved in my face. But, I was firm, I was clear, and I was right. A few hours later, the nurse whispered conspiratorially that my doctor had, at last, been called, and I would be receiving an enema, a strong laxative, and lots of fluids.
Teaching teenagers -- young teenagers -- to take control of their own health is crucial to becoming an adult. Practicing self-advocacy was empowering and kept me from having unnecessary surgery. I learned that my clinic and my parents trusted me and expected me to take ownership of my disease. Cystic fibrosis is a team effort, but the patient has to be the captain of her own ship.
Adult with CF
A writer and meditator, Eliza was a reporter decades ago but now focuses on poetry. She is a CF peer mentor through CF Peer Connect and acts in various other volunteer roles. In addition to posting her publications list and upcoming poetry readings, Eliza answers emails she gets through the contact page of her website elizacallard.com. She is from Philly, really does love soft pretzels with gobs of yellow mustard, and always roots, roots, roots for the Phillies.
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