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.
Facing the challenges of cystic fibrosis is something no one should have to do alone. Fortunately, I have been able to rely on my support system to give me strength when I wasn't sure if I'd be able to continue the fight.
August 2, 2018
Changing How I Eat Post-Transplant
Why CF Is More Than a Lung Disease
I laugh as hard as my lungs will let me as my best friends' voices drown out the busy noises of the hospital -- and, more importantly, the busy noises in my head. Noises that remind me I have a formidable fight ahead. A fight that requires me to pull strength from every corner of my being -- strength fueled by faith and friendship. The unconditional love from my friends breathes for me when I cannot. They believe in my ability to overcome; therefore, I have to believe too.
The nurse walks in and laughs at my best friends' antics to keep a smile on my face. This week, it is pies and Kacy walking into my hospital room wearing a huge panda head while Ashley, Amy, and Brittany follow behind with mischievous grins and two huge bags filled with all my favorite things.
Ever since we were little, they have always transformed my hospital room into a home, creating a space for healing through laughter. It has always been the perfect distraction from reality, but this time it was especially significant. Because at this moment, reality was too hard to swallow. If I didn't receive a new pair of lungs soon, there would be nothing left of me to continue the fight.
Although I had already received a pair of lungs from a beautiful donor in June 2016, I was now experiencing chronic rejection and needed a second pair ... a second double-lung transplant. It was a risky feat, but also a necessary one if I was to keep living.
So, I waited; but I did not wait alone. This fight takes a village, and I use mine to find my strength to fight. Every day, I could feel myself slipping away, but every day, I was held together by the love of my girls. I knew they could see me declining, and yet they always found the strength to smile. This strength pumped through my veins, magically operating my body to stay alive.
However, things soon took a turn for the worst. As my body finally became too weak to continue, I knew that my life was now in the hands of medicine and prayer. I realized it was a miracle that my body had lasted this long without failing, and my body had been sustained using their spirits to nourish my breath, my movements, and my fight. Now, all we could do was pray for a miracle.
As I laid in the hospital bed going in and out of consciousness, I could hear my friends whisper. At this point, the intensive care unit (ICU) had become very familiar to them. Cramming their long bodies awkwardly into the hospital waiting room chairs, they would eat their dinner from the vending machines. Then, with only a small backpack and toothbrush, two of them would take turns taking up residence in the ICU and holding down the fort while my angel of a husband received some much-needed rest. My village worked together to keep me alive until my donor, my hero, saved my life on Dec. 18, 2017, when a family selflessly chose to give life despite the pain of loss.
Every day, my donor's lungs breathe life and strength back into my body while my friends' presence brings life back into my soul. While taking a deep breath, I look back at this time and understand how powerful, unconditional, and unwavering friendships can create miracles.
Adult with CF
Selwa was diagnosed with CF at age 3, and her fight began right then and there in that cold hospital room. Now, at age 40, Selwa is a fighter who doesn’t take hearing “you can’t” from others lightly. Wife, mother to her two healthy children, accountant, and registered yoga teacher, Selwa lives the life she wants despite always being told the odds are against her -- something that just fuels her soul anyway. After two lung transplants, Selwa’s journey continues as she finds the beauty in breathing deep and living life. Although this journey to find her new breath has tested every ounce of her faith and mental strength, Selwa fought and fought hard despite the difficulties because she knew every breath was worth the fight. Uniquely, in her struggle, Selwa found beauty and love all around her lifting her up and fueling her fight. Find her story on Instagram or on Facebook to understand her fight.
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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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