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.
When I ran into a particularly difficult situation with my last job, the “d” word entered my lexicon for the first time: disability. While my life doesn't look like I thought it would, I have come to accept where I am and gained a new perspective on work and life.
January 29, 2016
My Changing Support System
Internalizing Feelings of Guilt with CF
From early on, cystic fibrosis left me uncertain about how my life would unfold. I would "back into" activities rather than making plans or setting goals. Graduating from college, I hadn't thought about a career, but before I knew it I was a high school teacher.
Up to this point, I had a good handle on my disease. CF was a part of my life, but it wasn't my whole life. But during my first semester of teaching, taking care of myself grew difficult. I was tired all of the time; I would pass out as soon as I got home and then wake up late. All of a sudden, life was complicated. When I went to my quarterly appointment with my doctor, my PFTs were lower than ever, I had lost a ton of weight and I had a grayish tint. She admitted me into the hospital that day. Afterwards, I changed my schedule, prioritized my treatments and, within a month or so, was back to my old self. Lesson learned: work on work-life balance.
Five years and a few jobs later, I ran into a particularly difficult situation again. I had used all my sick days and vacation days and even borrowed a few from coworkers. What was I going to do? I needed the job and the insurance. This was the first time that the big “d" word entered my lexicon: disability. Every time CF forces a major change in my life, my initial reaction is to say, "I'm not doing that."
Stubbornly, I gave work one more try. I was going to redouble my efforts and put CF in its place. I was shocked when the results were the same, but no one else was even mildly surprised. CF had kicked my butt.
Confused and angry, I finally -- begrudgingly -- applied for Social Security Disability.
I then faced three big questions: How do I live on a fixed income? How can I figure out government insurance? And who am I?
The challenges seemed daunting and scary. When the first check arrived, I cried. How was I going to pay for rent, food, meds, etc.? (Today I know that somehow I always make it through the month -- some better than others.)
The next issue was my insurance. Medicare and Medicaid are a labyrinth. The possibility that I would be on a fixed income with public insurance never occurred to me.
The first few months of not working were rough. All of a sudden, I did not have to be anywhere by 9 a.m. I had time to do my treatments and rest, but I got depressed. If I was not a teacher, who was I? I never realized how much of my identity came from my job.
When my friends would say, "I would love to sit home and watch TV all day," I wanted to punch them. The worst day of the week was Monday, a stark reminder that I had no place to be. I'm still not a fan of Mondays.
Being on disability has been a slow process of coming to terms with my disease. I had to reassess my expectations and hopes for my life. My notions of self-sufficiency were tough to let go of, and I had to learn when to accept help from my friends and family and when I could do it on my own.
I also had to learn that I am not my job, I am not my relationships and I am not my CF: each of these things are a piece of the puzzle that is me. I still had a shot at living, after seeing too many friends lose their battle. Letting go of self-pity became a necessity and I went through a lot of changes.
I love the Maya Angelou quote: “I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” It helps me gain a new perspective about work and life. Valuing myself was where I needed to begin. While my life isn't the one I thought I would have and CF is a bigger part of it now, I've come to accept where I am at. Acceptance drives a whole new idea of myself, and more often than not, I like my life.
Adult with CF
Rich was diagnosed with cystic fibrosis in 1969 when he was 6 months old. He also had an older sister with CF. Rich is a tough fighter who resides in New York City, and looks forward to many more years fighting CF.
May 2019 -- We were deeply saddened to learn of Rich's passing. Rich opened his heart to the CF community through our blog. He will be missed by many.
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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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