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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
When you are waiting to be listed for a lung transplant, it can feel like you're in limbo. Through the many frustrations and uncertainties, I've learned that it's important to get support -- not only for my physical health, but for my emotional health as well.
December 6, 2018
Feeling Guilty for Feeling Good
Realizing My State Representatives Are Human
Limbo: “An uncertain period of awaiting a decision or resolution.”
Gray area: “An ill-defined situation or field not readily conforming to a category or to an existing set of rules.”
These are two words that have come to define my life a lot lately. Although I am in the stages of advanced lung disease, I'm still not in “the window” to be listed for a lung transplant. I'm sick, yes -- but sick enough to need a transplant? Not yet.
People have shared with me on more than one occasion that the year leading up to being listed for transplant is a difficult and wearisome time. Speaking from experience, I can say it definitely is. You go through a myriad of emotions, from excitement over getting a second chance at life to complete frustration and sadness over wondering when -- or if -- you'll get that second chance.
This “limbo” period has taken away my independence and forced me to become more reliant on my parents, which means they now grocery shop, cook, clean, and sometimes do laundry for me if needed. My body is working harder than ever to just breathe, and it leaves me with such little energy that some days, all I have the strength for is breathing treatments and meals.
After being deferred for transplant a second time in September 2018, the reality of my situation really set in and my depression worsened. I began sleeping for 17-plus hours every day and the thought of getting out of bed was exhausting. I would find that I hadn't left my apartment for several days in a row and it was as if I was in a perpetual fog that just wouldn't lift.
It wasn't until I talked with my social worker and psychiatrist that I was able to fully admit to myself that the decline in my physical health had caused my emotional health to take a turn as well.
This perpetual limbo has left me wondering when I'll get my life back … when I can start traveling again and crossing destinations and experiences off my bucket list. It's as if I'm stuck on a train platform waiting for the next train to arrive, but it seems to be delayed and we aren't sure when it will arrive.
I have to constantly remind myself that it is only temporary and this, too, shall pass.
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Adult with CF
Born in St. Louis, Mo. but raised in Wichita, Kan., Elizabeth was diagnosed with cystic fibrosis at 4 months old. The youngest of three, and the only child with CF, Elizabeth's health began to decline during her sophomore year of college, causing her
to withdraw from school and move home. Three years ago, Elizabeth moved to the Bay Area to focus on her health. Despite the progression of her disease, Elizabeth enjoys traveling, photography, reading, and buying too many sweaters for her little dog,
Tucker. You can find her chronicling her journey of living, not merely existing on Instagram: saltywoman65.
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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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