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.
Going back to work was hard. So. Very. Hard. But with the mounting costs of cystic fibrosis, I didn't have a choice. The decision had been made for me.
December 16, 2015
Mara Goes to Washington
Dana Curry's Motivational Tips
After attempting to manage the mounting
costs of cystic fibrosis, the stress began to put a heavy toll on our family. My husband's income should have been plenty to support a family of five. But despite having -- what I considered -- two solid health insurance policies, we were paying tens of thousands of dollars out of pocket for Betsy's care. Maxed out credit cards and calls from collection agencies had me jumping every time the phone or doorbell rang. Something needed to change. I knew it. So with a shaky hand, I called the one person who has always been the strongest voice of wisdom for me.
Hearing the anxiety in my voice, my dad came right over. He sat down next to me on the sofa and I curled into his arms and wept. Rather than assure me that everything would be okay, through his own tears, he started to talk about his mother. I was very close to my grandmother and already knew much about her. As a single mom, she worked hard to provide for her two sons and her own mother. But what I didn't know is that she often juggled three jobs to do so. She trembled when the electric company came to collect, meeting the collector outside as my father listened to her plea for a payment arrangement. My father always spoke of his mother with great admiration. But this day, he spoke more of her strength and sacrifices. Then he said the words that shook me to my core, “You're a lot like her.” This simple sentence was a tremendous compliment, but it also carried a heavy burden.
I realized that I didn't have a choice. The decision had been made for me.
Going back to work was hard. So. Very. Hard. Everything from the simple task of getting dressed every morning to the complicated job of meeting the needs of my family was more difficult than I had ever imagined. I knew that this was one of those times that would require me to call in reinforcements. My girls were still small, and I made sure to set up play dates rather than babysitters. This was about the time that caller ID became widespread and I'm pretty sure people like me were the reason it was invented.
Every day, I made a menu of breakfast, lunch and snack options that my girls would check off. Dinner was non-negotiable. My father would call me every morning and ask, “What can I do for you today?” I learned a lot from that simple gesture. Those morning calls meant the world to me. I now remind myself to do the same when someone else is in need.
I have also been fortunate enough to fall into a career that not only helps me feed my family, but also feeds my soul. I have always felt that you should love what you do and never forget why you're doing it. I love what I do and I am doing it for my girls. I don't know how they'll look back on their working mama. I often feel like they resent the time that it takes away from them. But I pray that one day when they look back, as my father did, they will see that this really was for them. I hope that they are never forced to work a job that they don't love, and I simply want them to know that they are empowered to change the direction of many aspects of their lives.
Mother of a teen with CF
Mary is a mother to three teenage girls. She is on the Board of Directors for her local CF Foundation chapter. Mary has advocated through all media outlets on the local, regional and national levels for the Foundation and several other charities that are close to her heart. She also currently serves on the Parent Teacher Organization Board at her girls’ high school and is employed as a CF Client Advocate for the CF Services Pharmacy. Mary and her family reside in South Texas.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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