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.
A few years ago, it took one small staircase for me to realize that my health was on the decline. I look back now on that moment fondly, though, because it helped me learn to listen to my body.
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Most people have some inanimate object that is sentimental to them -- something that they hold dear to their hearts. A person will place high value on an object that has played an important role in their story or that, perhaps, reminds them of a significant
time in their life. Of all the items to be found in the world that I could be sentimental about, I never thought that I would have an emotional tie to an old, narrow, wooden staircase.
Every human being living with a chronic condition like cystic fibrosis can recognize that life has its challenges, and that one's health can change dramatically. I was not feeling my best during the summer of 2018. I had been working more than I should
have, which -- in turn -- was causing me to neglect taking care of myself. I wasn't doing my breathing treatments consistently, nor was I taking my meds,
exercising, or getting enough food and sleep regularly.
I was driving myself into the ground and feeling awful. But it wasn't until I was walking up my neighbors' staircase (which I had done countless times before) that I realized just how miserable I was feeling. This wasn't my “normal” that I was used to.
It was clear to me that my health was obviously going downhill when I was physically struggling to climb up those stairs. There were 14 steep, wooden stairs but it seemed as if there were 100. I felt like I could barely breathe, and it was terrifying.
At that moment, it occurred to me how I could gauge the decline in my health with even the simplest activities, such as climbing stairs or trying to draw in enough air to sing.
Needless to say, my clinic appointment two weeks later proved that my struggle up the staircase was indeed a good indication of my declining health. I found out that I had a drastic change in my pulmonary function
test numbers, dropping to 37% FEV1. Immediately, I was placed on two oral antibiotics, as well as my first consistent course of TOBI® in months (because
work was always in the way). I also had to take a month off from work.
Almost miraculously, after three weeks of more rest, medicine, treatments, and doing simple yet challenging tasks (like eating more), my numbers rose. I recognize that this improvement is something to never take for granted and to always be grateful for.
I had a lot of time to think while I was not feeling well, and I came to the wise conclusion that I can monitor myself even through the simplest of tasks.
I clearly saw that I should heed the advice my body gives -- whether my body is screaming at me, or silently pleading with me to pay attention to it.
Many people may treasure mementos handed down through generations that have sentimental or monetary value. For me, however, I have learned to cherish a steep wooden staircase that helped me realize what I needed to do for my health. Sadly, my neighbors
with the staircase have since passed away and I can no longer take a victory climb on those stairs. I can still look back and recognize that despite there being a rocky point with my health, I cherish the memory of realizing what was necessary for
me to do. I can treasure that staircase in my mind forever. And to everyone out there going through their own rocky point -- keep climbing.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Jessica was diagnosed with cystic fibrosis at age 3. She formerly worked in the banking industry and she values Jesus, her family and friends, and hot, sunny weather. Alongside her boyfriend, Jessica enjoys exploring new towns and nature.
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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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