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 convenience of growing up and living in a small town is that everyone knows your cystic fibrosis story. But, moving to a new city doesn't mean you have to greet everyone with a monologue about your illness. Wait until CF creates an opening.
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When you spend the majority of your life in the same town with the same friends and family, go to the same school, and spend your life being the same you, the same story gets passed around and -- eventually -- you find that it's almost unnecessary to tell your cystic fibrosis story because most people already know, or they know someone who does.
But what happens when you find yourself in new surroundings, with new people, new personalities, new opportunities, and no one even knows your middle name? It can be such a breath of fresh air, but it can also be intimidating and overwhelming knowing that you have to start all over.
I would love to share with you some of the things I have learned in the last eight months about how to approach the “tomato in the room” (yeah, yeah, I know that's not the phrase ... but I'm watching “Parenthood” and that's Hank's phrase, and I sort of dig it) when you are living in a new city. And, that tomato in the room is, “What is CF?” or “Why are you so sick/what's wrong?”
One thing I have picked up is to not feel pressured to tell my CF story right off the bat. You know the cliché, “Actions speak louder than words?” Well, in the case of CF, the actions will come sooner rather than later and that opens the door to start telling your story -- the moment you have a coughing fit, and it sounds like you've been smoking three packs a day for the last 10 years; or the moment you have to cancel plans at the last second with that person who was so nice to invite you out in the first place when they barely know you because you literally can't even sit up; or even when you just don't show up to an event and your husband has to go alone, and someone asks where you are. These are perfect scenarios to explain your situation and let your new friends into your world a little bit.
I have learned to be open to questions and let people know that I welcome them. You can only explain the details of CF in a short amount of time so well. When you do start the explanation process, be up front about it and tell them that it is a long story, and everyone's story is different. You'd love to answer all their questions (because you're a walking encyclopedia of cystic fibrosis ... DUH). The more open you are with answering questions and sharing your story, the more people will get to know you and -- maybe -- even find some common ground with you.
Another thing I have learned is to just be light-hearted with your CF. Never diminish the significance and detriment of the disease. Just let them know that while you deal with this terror day-in and day-out, YOU'RE STILL A HUMAN BEING. And, you still love to live life to the fullest and have fun!
Beware that people will look at you crazy when you tell them that you have multiple hospital stays a year and do IV antibiotics at home for weeks at a time. But, when they hear that you get to order Uber Eats and stuff your face with a whole pizza's worth of calories, it tends to make them smile and laugh with you (and don't forget to introduce your IV pole and PICC line by name ... yeah, I mean you Dazzle and Linus).
If you tell your story in misery, you will -- most likely -- live your CF life in misery, and you're letting CF win. So, DON'T LET CF WIN. Let people know that you're fighting for your life and kicking CF in the rear-end while you do it. Let them know that you're a warrior. You're a CF hero and nothing will break you. It may wound you and land you in the hospital for a week or so, or send you home on an IV for a month, but it won't break you. You are resilient.
Every person has a story to tell, and every person has to start somewhere. Don't be afraid to tell your CF story. You may have CF, but the world needs to know that CF doesn't have you.
Adult with CF
Amye, 25, was diagnosed with CF at birth. She is resilient and does not let CF hold her back. She strives to live a normal life and is diligent about taking care of herself and fighting for her future. Amye and her husband, Zach, are youth pastors in north Georgia. They enjoy going to the beach, the mountains, and concerts. She also blogs at amyephinazee.com and enjoys cooking and featuring her creations on her Instagram (@phinazeeeats). Amye's spunk is often contagious, and she works to inspire everyone around her to live the best life they can.
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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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