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.
Practicing meditation has helped me cope with many of the stresses that come with a life with cystic fibrosis.
January 12, 2018
Looking Back on My Make-a-Wish
How I Transitioned Off of My Parents’ Health Insurance Without the World Ending
Fifteen years ago, looming on my horizon was Thirty, with a capital-T. I knew the power “carpe diem” had wielded in my life, that I had lived life with travel, a happy marriage, wonderful family and friends, and a deep enjoyment of my work. I had no regrets, no grudges, no projects I hadn't gotten to. I wasn't cavalier about death -- it made me sad to think of leaving my wife, Emily, and my family, of course -- but I was resigned.
Thirty came with a huge party thrown by my family. “She's still kicking!” the invitation read. Friends came from all over the country, and I was grateful and humbled.
A month earlier, Emily and I had decided not to have kids. My health was deteriorating too much to be the stay-at-home mom I'd always dreamed of being. We also decided to sell our house, which was too big for just two people. We moved into a one-bedroom apartment with our two cats.
Almost at once, things started to go wrong. One of our cats died, which brought home to me our decision not to have children. My lungs became so unpredictable and I went on government disability. I fell into a serious depression and started having panic attacks, during which noises deadened and I felt choked of all air. Things that had once sustained me -- hiking and writing and being with family -- felt pointless and distant. I slept a lot, and could barely smile when Emily got home from work. In November of 2005, I started taking medication to help my depression and I found a great therapist to work with. I learned to “fake it 'til you make it,” and shakily began re-engaging in life.
And then, the catalyst for the upheaval of my entire life happened. At a routine clinic visit, my doctor looked me in the eye and stated that the trajectory of my disease meant I could live to 70. “No one can know, of course,” he said, “but 70 is not beyond the realm of possibility.”
My family and friends were thrilled. They congratulated me, and I loved them for it, but inside I was completely miserable. How could I possibly maintain “carpe diem” for 40 more years? Didn't everyone know that I was ready? Didn't they know what hard work it was to stay healthy? I knew I should be happy, but I just felt weary.
I was clicking around on the web one day -- the way you do when you're surfing for answers to empty questions -- and saw an advertisement for a meditation class through the Penn Program for Mindfulness. I talked to Emily, who had been such a rock during these years of misery, and we decided to take the class together.
Meditation was just about watching your breath, right? But watching my breath -- the seat of pains and hospitalizations -- was agonizing. I hated my breath, its crackles and rasps, its tightness, its meaning to me of hopelessness and death. When I tried to do a body scan, flashbacks of waking up with doctors at my hospital bedside engulfed me. If I meditated on sound, all I could hear was tinnitus -- caused by antibiotics.
My teacher was wonderful. He gave me practices that centered on sensations in parts of my body untouched by cystic fibrosis, taught me to recognize panic early enough to stop it, told me to be kind to myself when it was hard. Pain, physical and mental, happens to all of us, and meditation allows you to notice and accept it. Meditation is looking at the reality of living with a chronic illness, and saying, “I see you.”
That was 11 years ago, and I now realize that the most dramatic change of my life was the moment I decided to sit down and do nothing.
I still get sad and anxious sometimes. But I have learned to have pain without suffering. Watching my fears, exploring them, has become an unpleasant but interesting experience, like watching my nephew get his first vaccinations. Seven years ago, I woke Emily in the middle of the night to say, “I'm having a panic attack, but it's OK!”
I meditate day by day, week by week, moment by moment, whether by sitting on the cushion, doing yoga, or mindfully washing the dishes. I feel more present than I ever did living full-throttle. I am a Buddhist, and I study the dharma every day, learning bit by bit how to live and how to die. My favorite thing to meditate on? My amazing, beautiful breath -- how it crackles, how it pushes to keep my lungs open, how it is part of me, how it keeps me going. Maybe even until I'm 70.
Adult with CF
A writer and meditator, Eliza was a reporter decades ago but now focuses on poetry. She is a CF peer mentor through CF Peer Connect and acts in various other volunteer roles. In addition to posting her publications list and upcoming poetry readings, Eliza answers emails she gets through the contact page of her website elizacallard.com. She is from Philly, really does love soft pretzels with gobs of yellow mustard, and always roots, roots, roots for the Phillies.
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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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