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.
This is my story about when I met a man who showed me kindness, support, trust and compassion in a way that I had never known, and how I explained my CF to him -- on my own terms.
June 9, 2016
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For years now, I've read endless accounts about people with cystic fibrosis and their supportive significant others with whom they share their lives. Living with a chronic illness has left me guarded and leery about relationships, and I have longed to find inspiration in someone else's story. Dating is a precarious game, no matter the circumstances, but I had never once read about what this playing field looks like when you throw CF into the mix, and, more important, advice on how to share this with a partner. I want to share my story about when I met a man who showed me kindness, support, trust and compassion in a way that I had never known, and how I explained my CF to him -- on my own terms.
Some people wear their battle scars on their sleeves, but not me. I hold my battle with CF rather close. It is only when I find myself in a situation with a person who is worthy of my trust and makes me feel comfortable that I will disclose my CF. It is not an easy disclosure to make, and I have always contemplated how to help someone understand that CF does not define me, but it has made me the person I am today.
When I met my boyfriend, Andrew, he told me on our first date that he struggled with a health issue. While hearing that we both shared this in common was comforting and reassuring, I still waited to tell him about my CF. I wasn't ready. Soon thereafter, I did tell him, and it happened very organically, which was key. It started with a query into my enzymes the first time we ordered takeout. I'll always remember his initial reaction to my introductory explanation of CF because it was a reaction that I had never gotten before. It didn't scare him, and in fact, it showed knowledge.
“Oh, cystic fibrosis. Isn't that what Boomer Esiason's son has?”
YES! Yes, it is. “I think I like you,” I thought to myself with a smile.
I believe that this initial conversation about my CF helped set the pace for further discussions down the road, including explaining my chronic cough, daily breathing treatments, shortness of breath, and acknowledging my port. I explained my port to Andrew only a few days before needing to go on IVs for the first time in six months. This conversation meant venturing into new territory and, honestly, I was scared. But in the end, it went better than I could have hoped.
All relationships are different, and there is no given formula for us all to get through a conversation like that, but I can offer my best advice: be honest and true to yourself. This is your reality, and if someone cares enough they will learn to share this reality, too.
If they don't, that person is not right for you. It sounds trite, but when life hits you the hardest, sometimes the most clichéd advice rings the clearest.
As I get used to letting Andrew into my inner circle, I've come to take pride in how I manage the hand that I was dealt. I believe that we get back the energy we put out into the world. Not in a karmic sense, but more literally -- if you want to create a panic, your best bet is to start panicking. As our relationship grows and I explain different aspects of my life with CF to Andrew, I try to do so calmly and pragmatically. In return, I have found someone who puts me at ease when I am most vulnerable.
That day after I told Andrew about my need for IVs, I received the perfect text from him: it thanked me not only for telling him, but also for explaining things. He was supportive, and best of all, he threw in a little joke, which is one of the many reasons why I love him. The way I see it, if you can't have a sense of humor about life, then it's been nice knowin' ya.
Do not let your battle with CF close you off to finding the right person to share your life with. Embrace it as part of who you are, and a special person will see the beauty in this.
July 2017 -- We were deeply saddened to learn of Amanda’s passing. Amanda opened her home to us for a photography shoot in 2016, and her heart to the CF community through our blog. She will be missed by many.
Adult with CF
Amanda has been fighting CF since she was diagnosed at 6 months old. Originally from central New Jersey, Amanda has been living and working in New York City for the past six years. She is a proud graduate of Syracuse University, where she earned degrees in public relations and psychology. After college, Amanda began working at a boutique public relations firm where she capitalized on her love of food and the hospitality industry. Amanda has now parlayed her work-life balance to freelance PR consulting, where she enjoys exercising her creativity with lifestyle and hospitality projects. Follow @gaynorface on Instagram, or contact Amanda directly at firstname.lastname@example.org.
July 2017 -- We were deeply saddened to learn of Amanda's passing. Amanda opened her home to us for a photography shoot in 2016, and her heart to the CF community through our blog. She will be missed by many.
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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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