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.
The challenges of living with cystic fibrosis can sometimes be overwhelming. When I hit rock bottom, I found that my faith in God restored me and has helped sustain me through difficult times.
August 27, 2020
Putting Convenience Before the Vulnerable
Choosing Kindness Over Anger
Growing up as someone with cystic fibrosis, I obviously had some health issues, but I was able to play sports and do many things young boys like to do. I still enjoy playing sports and being active as I like to believe that I'm not becoming slower and less athletic the older I get, even though reality says otherwise. I made the extremely questionable decision to run a half-marathon last year on four weeks of training. It was my first and last
half-marathon as a 60-year-old woman passed me on mile 9 and asked me, “Are you OK?” as she left me in the dust. Those final 4 miles were the longest and most humbling 4 miles of my life!
Here is my story of how suffering led me to experience a hope that my heart had been longing for. I believe it is a hope that we are all longing for. Sometimes, suffering is the main way we can experience that hope.
My CF started to become more difficult as I began my teenage years. I was introduced to PICC lines and the wonderful IV antibiotic of tigecycline (if you have done that antibiotic, you know I'm joking when I call it wonderful). Throughout my life, I have had around 15 PICC lines, which certainly is less than many other CF patients, but it is more than enough to bring me to the
end of myself. I can remember several nights crying out in tears and frustration. This is where Jesus shines light into the darkness with a life-changing and eternal hope. I experienced him in a life-changing way the summer of 2011. After two-plus
months of a second round of tigecycline and 20 pounds lighter, I was at the bottom. God met me where I was: broken, empty, and helpless. I saw there was nothing I could do to make him love me more or less. I saw that he was all I needed for everlasting
I saw that the Christian life isn't one without suffering, but rather is one where God is with me in my suffering. I surrendered everything and -- nine years later -- I'm thankful for that summer and for my CF that brings me to the end of myself where
I find God embracing me as his own.
I can recall several times where I wanted to ask myself, “Why me?” as I live life with CF. I have also wanted to ask, “Why us?” as my wife and I can't have children naturally because of my CF. Although I have asked that question many times, God has shown
me he is faithful and good, and my suffering is not without purpose. I have certainly struggled to have joy through the big effects of living with CF -- such as PICC lines, infertility,
and hospital stays. However, I honestly think I have struggled more to have joy in the midst of the smaller effects of CF that don't seem as difficult. These are small issues that most people don't realize are effects of living with CF but are reminders
that I don't and can't live a normal life. It is easy to drift into the questions like, “Why me? Why can't I live a normal life?” If I am being honest, I have thought several times, “If I didn't have CF, I could be or do ...” Whether I am correct
or it is my competitive ego talking is irrelevant. My identity and worth are not found in what I can or can't do, but they are found in who I am in Christ -- an adopted son. That identity is one that I can't lose because I never earned it but rather
received it through faith.
I must remember that God didn't make a mistake in allowing me to have CF, and he is working even when I can't see it. God has provided every time and by his grace has given me a great life to thrive in CF.
I have been married for almost two years, and we are in the process of trying to have kids. I have an awesome full-time job that I love, I am working toward my master's degree,
and I recently got put on Trikafta®, which has made a huge difference.
My hope is not in myself, my family, my job, my seasons of good health, my abilities, or my accomplishments. My hope is found only in the life, death, and resurrection of Jesus Christ. My hope is in whom God has been and always will be. Faithful. Good.
Loving. Wise. Powerful.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
I grew up in Columbia, S.C., and was diagnosed with CF when I was 7 weeks old. My wife and I live in Sumter, S.C., where I serve as the student pastor at First Baptist Church Sumter. I love sports, running, and hanging out with friends and family.
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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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