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.
I definitely attribute much of my good health to my support system. This disease would be much harder alone.
February 1, 2016
I Really Want to be “Mom”
I Am Not My Job
I got married in October of last year. It was 70 degrees and sunny; a perfect fall day for a wedding in Kansas City. I was marrying the best man I've ever known, and I felt privileged beyond what I deserved. Standing at the altar, the occasion really hit me hard. And when he wholeheartedly agreed to love me in both sickness and in health, we knew those words carried a lot more weight than just a line within our vows.
Throughout my life, I have been lucky enough to have had a solid cystic fibrosis support system. Before I met my husband Kory, I had my parents and my siblings. As rare of an occurrence as it is, my brother, sister and I all have cystic fibrosis, and we were fortunate because our parents assumed a lot of the responsibility of our disease. My dad mostly handled the
financial side of this chronic illness, and my mom mostly handled our care.
From the day I was
diagnosed at age 7, all the way through high school, my mom took the driver's seat in the management of our CF. Like most teenagers, I think my sister and I thought we had everything all figured out. In reality, we weren't even ankle-deep in what it takes to fully take on cystic fibrosis -- we had a lot of help. I never had to feel like I was alone with my disease. I never had to worry about how I would afford a yearly
insurance deductible or wonder how I would get myself to the hospital. I definitely attribute much of my good health to my support system. This disease would be much harder alone.
So the day that I left for
college was a scary one. I did the usual, “Oh, I'm so ready for college. I can't wait to get out from under my parents' roof!” song and dance. But then I cried beneath my sunglasses as I pulled out of my hometown and onto the highway. Nostalgia and a fear of the unknown were setting in, but there was also something else there. The worry of how I was going to keep myself healthy on my own weighed heavily on my mind. I wasn't sure I knew how to do that.
Under my mom's care, I hadn't been hospitalized since early high school, but by my sophomore year I had landed myself in the hospital. Handling my care on my own was proving to be difficult, and the next few years were challenging as I learned by trial and error. Sticking to a treatment regimen, paying close attention to my symptoms, not forgetting to refill prescriptions and being a normal college student was tough.
Throughout high school and college, I had friends and boyfriends, who, at varying levels, understood my
life with CF. Some of them were great and would even hang out with me while I did treatments or come visit me in the hospital. But some weren't so great.
In college, I dated a guy who dumped me while I was in the hospital because my CF scared him. In the end, it was a good thing I had a “built-in” screening process because relationships like that would never have worked out anyway.
Luckily, towards the end of my junior year of college, I met the man who, a year and a half later, would ask me to marry him. We hit it off almost immediately, and it was clear that my CF wasn't a deal-breaker.
Kory knows how important it is for me to do
exercise and makes sure to remind me of that if I sometimes forget or lose motivation. An added bonus is that he works in health care administration, so he understands hospitals and clinics. Kory is the best partner I could have asked for. He is selfless when it comes to my medical needs, takes a true interest in my health and is willing to do whatever it takes to make sure that I am happy and healthy.
I believe that a strong support system is everything when it comes to managing this chronic illness. I attribute my good lung function and overall good health to the support that I have received and the genuine interest that people have taken in keeping me well. A support system is there to hold you accountable and to make the long and winding road more of a journey than something we're just getting through.
Having a husband who assumes the role of my primary supporter has been one of the greatest blessings in my life. I can only wish the same for my brother, sister and other adults living with CF.
Adult with CF
Morgan lives with her husband, Kory, and twin babies, Alder and Winslow, in rural northeast Kansas where she enjoys gardening and chicken-keeping. She has many interests and is always entertaining her curiosity, but her mainstays are spending time outside,
reading, writing, photography, and cultivating a relationship with plants. She grew up with two younger siblings, Allison and Mason, who also live with CF. You can follow her on Instagram. P.S.
Beets, Bears, Battlestar Galactica.
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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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