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.
Losing my best friend and cystic fibrosis mentor was crushing. I had to learn to let myself grieve -- and do it offline -- to be able to cope with this loss.
April 28, 2020
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Receiving the news that a friend with cystic fibrosis has passed, is one of the most painful experiences that one can go through. In December 2018, my mentor, big cyster, and my first friend with CF, passed away. As soon as I received the phone call, my world and my heart completely shattered.
Grief is hard to process and, as I look back upon that time, I now realize I didn't know how to process it.
Losing family members is one thing, but when you lose someone who shares the same disease as you, it affects a person in a completely different way.
I thought that I could rush the healing process like ripping off a Band-Aid. I did … for a short period of time, but it wasn't a process of healing. It was more of pushing through the numbness of grief to finish my classes until I could fly home to be with family.
I thought that because my mentor taught me to be tough, I had to hold it all together and continue to be positive for family, friends, and others in the CF community. However, I had forgotten important advice she once shared with me: “It is OK to feel scared and to cry. Sometimes we tell ourselves that the brave thing to do is to hold it all in, but really it takes some guts to say how you really feel.”
I felt angry, sad, and heartbroken. Everything reminded me of her -- who I was as a person, places where we had hung out, places we had surfed, and the list goes on. She wasn't a CF friend I met through social media; she only lived 20 minutes from me. See, I never would be the person I am today without my big cyster. I also wouldn't be so public in sharing my cystic fibrosis story and building a social media presence without her guidance. She is the one who inspired me to be an advocate for -- not only myself -- but for others with CF. When we met to hang out, we would follow CF protocol. We ate lunch outside and sat 6 feet apart at a large table. We would surf and stay more than 6 feet apart. We would wear masks to ensure that our health wasn't being compromised.
In February 2019, we celebrated her life and honored her by organizing a paddle out to occur in May. A paddle out is how the surfing community honors a surfer who has passed away. Everyone paddles out on their boards with flowers and joins hands to form a floating circle. This is such a special and intimate moment to share with others. Our circle had formed into a heart, which really made it even more special.
It wasn't until June that I began to take time for myself to grieve. I let myself feel the emotions and the pain.
My mentor was such a huge part of my life that -- when losing her -- I lost a piece of me.
During my time of healing, I had to basically strip everything away to find myself again. I took a step back from social media and only posted occasionally. I did not pressure myself into feeling that I had to post something because I had followers or to keep my social media presence.
My family and friends were very supportive of me during this time. They were there if I ever needed to talk or just cry. They also gave me the room to explore and try new things. I got a job, began surfing more, started volunteering at a place that is special to me, and experienced traveling to a different country. Everyone has their own way of grieving. For me, partaking in all these activities was healthier, instead of going on social media to share every single detail of how I was feeling. I didn't do all these things to push through my emotions; I did them to feel closer to my big cyster because I always told her that I would do these things.
It wasn't until January 2020 that I felt ready to share my CF story again and to be fully present with my social media presence. I made sure that when returning to social media, I was ready to talk about cystic fibrosis and to continue being an advocate for those with CF. By continuing to challenge myself and follow my dreams, I know I am honoring my dear friend and making her proud. I am still partaking in all the activities that I explored while healing. I truly do feel closer to my mentor when experiencing all my new hobbies.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Young adult with CF
Ashley was diagnosed with cystic fibrosis at birth. She was later diagnosed with cystic fibrosis-related diabetes in 2011 and diagnosed with cystic fibrosis liver disease in 2015. She is currently pursuing a bachelor’s degree in cinematic arts and technology
and later hopes to share others’ stories through documentaries. Outside of school, Ashley enjoys surfing, adventures with friends, and working as a YouTube creator. She also is a producer and contributor to various podcasts. She has a personal channel,
Ashley's Roses, and contributes to Staying Salty. Ashley is also busy taking advantage of every opportunity that is provided and living life to the fullest.
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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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