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.
After years of hospitalizations and low lung function, I am now feeling healthy on Trikafta® -- so much so that I finally feel like I can reset the clock and start living my life.
October 14, 2020
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We have all heard the quintessential story of how a “normal” life is expected to unfold. We are born carefree and remain happy during childhood, become awkward and curious in our teens, explorative through our 20s, confident and steadfast into our 30s
and 40s, continuing to grow older and wiser as we seek out the unknown and explore the world. We generally take life as it comes, knowing we may be primed to leave this earth from natural causes, an illness later in life, or any number of reasons
-- and eventually we leave the living up to those we've met and loved along the way.
What if instead we were told that we would live our lives in reverse? That is what living with cystic fibrosis has been like.
I was lucky enough to have a carefree and happy childhood. However, the story changed in my teens. Prioritization of my heath became an everyday reality. As a 28-year-old, I have been through well over 40 two-week hospitalizations since my teens. I have
spent at least an hour each day taking medications and completing my breathing treatments. From an early age, I became responsible for maintaining my health and didn't have the luxury of taking
days off, despite having days when I have felt so sick that simply showering was a difficult task. Even with my daily commitment to my lifelong health and treatment, a lung function test I took at age 23 showed that my predicted age based on my lung
function was 84 years old. In other words, I was a young adult with the lungs of an elderly person. That didn't quite fit the path that my friends were on.
I have essentially lived my life in reverse. I started my story in an unhealthy body and have worked hard during my teens and 20s to try and keep up with my friends and family who have lived their lives on opposite timelines.
I have always been up for the fight to keep going, but the fight always came with consequences: missing time with family and friends, skipping out on events and travel, and living an overall careful, and sometimes timid, life to keep my sickness at bay.
Then, everything changed for me.
On Dec. 8, I swallowed two small orange Trikafta pills. Although the drug was described as a “game-changer” and a “transformative medication,” I made sure to keep my expectations
realistic. After only a few days on the new drug, my airways began to clear, the bags under my eyes began to vanish, and I started to feel a brand-new definition of healthy. I couldn't believe it. Now, here I am six months later, and I have not had
a single CF exacerbation. I wake up with energy, I laugh without coughing, I can speak my mind without having to constantly clear my throat; but more than anything else, I've gained so much energy to live the day-to-day with intention and purpose.
Throughout my entire life people have called me brave and positive, but I don't think people fully understand that the fire to fight is in all of us. Most of us just aren't required to channel that fight at a young age.
If you were standing at the beginning of an obstacle course and knew you wouldn't be able to see your family and friends, explore the world, or accomplish your goals unless you climbed walls and jumped over hurdles, would you do it? Cystic fibrosis just
happens to be my obstacle course, and Trikafta continues to break down the walls and hurdles I've fought through for the last 28 years.
I will never fully be able to describe what it is like to see the world through CF eyes and then have the fog be lifted, but I do know one thing: I am incredibly grateful. I am grateful for everything cystic fibrosis has taught me to this point and grateful
to live out the last two years of my 20s with an explorative spirit and a healthy body to match.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Bridget is an adult living with cystic fibrosis in sunny San Diego. She works full-time for a family-owned real estate company and became a partner in the business in 2019. She enjoys staying active in any way possible and always has her head in a new
book. Bridget is the vice chair of the San Diego Tomorrow’s Leaders, the Cystic Fibrosis Foundation's young professional program that helps raise money for CF. You can follow her on Instagram.
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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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