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.
As a teenager with cystic fibrosis, I always felt that my body was different, and therefore, shameful. But in one day, I had a change of perspective that allowed me to love myself and appreciate how far I've come in my journey with CF.
July 18, 2017
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I was 13 years old the first time I realized my body was different from everyone else's. I was standing in a two-piece bathing suit at the pool when I noticed that other people were staring at me and talking amongst themselves as they looked over at my body. Grabbing a towel to cover up the lines and marks that showed my struggle with cystic fibrosis, I ran to the bathroom crying and looked down at my scars with disgust. “Am I even normal? Why am I different? What are these scars? What does the word 'beautiful' even mean?” I thought to myself as I stared in the mirror. Honestly, it had never occurred to me how CF made me so different until that day.
As time went on, I became obsessed with what is considered to be "normal" and "beautiful" in our society -- always looking at magazines and picking out what I thought made the women in them beautiful. For starters, there were no scars or marks on their bodies; my body alone had nine major marks. To me, that was nine too many. I also had dark circles under my eyes from always being tired, which the magazine models definitely did not. It got to the point where I would look in the mirror and just cry because of how ugly I thought I was -- and I wasn't just talking about my body anymore. It became all of me … my face, my eyes, you name it, I hated it.
Around the time I turned 20, my disease started to progress more quickly than it had before. My lungs became more infected, and I was put on 8 liters of oxygen, 24/7. I was house-bound for almost a year. Simple tasks like walking around the store became nearly impossible for me, and I was losing hope in myself. I started to tell people goodbye, preparing myself to leave the people I loved the most.
But then, in one day, my entire outlook changed. My sister took me on a hike to one of our favorite look-out spots, and I hadn't done it in months. Before we went, I had it in my mind that this would be the last time I would ever do this. When I finally got to the top -- out of breath and barely able to stand -- I looked at the sunset and began to cry. That's when I realized: I am a fighter and always have been, and fighting is exactly what I had to do now. I had to fight for breath and for life. After that day, I began to push my body to new limits and make new goals for myself -- to see and do things that others do not think are possible for someone with cystic fibrosis.
Through my new goals and adventures, you can say I have fallen in love with myself. In fact, I love every scar on my body, as each one tells a story of how I am still alive and breathing. After all, a lot of people can't say that they have overcome more than 120 surgeries, so far, in their lifetime. Even my man-made belly button is beautiful. Today, I'm embracing every single scar with a new perspective and love for myself.
Now that I've become stronger with who I am, I wanted to make myself a promise. It had to be something very meaningful and concrete. I found a ring company that makes pinky promise self-love rings. When I got my ring, I made a pinky promise: to put myself and my health first; to love me, and all of me; to only allow people into my life that respect both me and my body; to never take less than what I deserve; to stand up for what I want and what I believe in; and to live each day to the fullest and hold nothing back. I live out this promise every single day. When I start to feel weak, I look at my ring and remember my promise and how far I have come.
I am going to end with a quote that inspired me. "You will never be successful unless you turn your pain into greatness. Allow your pain to push you from where you are to where you need to be. Stop running from your pain, and embrace your pain. Your pain is going to be part of your prize and product.”
So, here is my challenge to you: push yourself and love yourself every day. All of you!
Adult with CF
Kassandra was diagnosed with CF before birth and adventures through life one breath at a time. Every day is a new adventure, and she enjoys hiking, kayaking, and paddle boarding. Kassandra is passionate about showing others that people with CF can do anything they set their minds to, and loves to push the boundaries of what society considers “possible” for someone with her disease. Follow Kassandra on Facebook and Instagram @thesassyCFer_.
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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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