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.
Dating did not adequately prepare my husband for the mental toll that cystic fibrosis takes in your life; but he rose to the challenge in our first year of marriage, and I discovered the beauty of vulnerability.
November 8, 2018
My Slide into Substance Misuse
Im More Than My Lung Function
When a couple first announces their engagement, they start to hear a lot of “warnings.” People tell you your first year of marriage will be the hardest, but most joyous, year of your life. But, when you throw a chronic illness in the mix, it brings a whole new perspective to the world of newlywed life.
Zach and I dated for the better part of seven years before we married. Thankfully, he understood my cystic fibrosis journey and, for the most part, understood what it entails. However, until you're living beside it every day and enduring the ins and outs of caring for CF lungs, you can't fully appreciate the workload. What he didn't get to see when we were dating is the emotional toll that CF takes.
Doing my treatments in front of him has never been an issue. In fact, when we were teenagers, he would make special trips to see me when I was in the hospital (which was a big deal because it took more than two hours to drive to the hospital), and when we were dating, he got the “privilege” to stay overnight in the ER with me. Needless to say, I think he “got it.”
But in marriage, when he gets the raw and uncensored version of me, it can often be challenging. There's the coughing all night and tossing and turning, fighting a bit of depression, and not being able to just go somewhere at the drop of a hat because we have to make sure I'm physically able to handle it and I can bring my treatments along.
However, we handle it, and it IS our normal. He made it clear to me that he loves every version of me. And the part of our vows that read “in sickness and in health” was not just a formality for our lives. It stands true every single day. On the days where I feel wonderful and then the next day when I can't seem to make it out of bed easily ... he gets it, and we plan to make sure that I'm as healthy as I can be.
Marriage takes two. As a CF patient, I have always been very independent; you have to be to a certain extent. When you're married, though, there is this beautiful vulnerability that you start to discover. It is a safe place with your partner. You learn that your spouse truly does accept every part of you. And that has been such an important lesson for me to learn.
My husband has such a graceful way of letting me know he is always on my side and has my best interests at heart. When I have a day where I am just tired and I do not feel like doing my treatments or taking my pills, he gently reminds me that I need to remember who and what I am fighting for. Not only am I fighting for me, but I'm fighting for him as well. I'm fighting for a long, healthy, happy, and full life for us.
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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 is also a blogger and foodie and enjoys singing. Amye's spunk is often contagious, and she is an inspiration to those around her.
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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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