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.
My oldest son, Nathan, was 18 years old when he was finally diagnosed with cystic fibrosis. While we both had been waiting a long time to get an answer to what had been plaguing him, I'd been hoping and praying that he'd escape the CF sentence. The diagnosis, however, did not come as a surprise because exactly 35 days earlier, my younger son, Caleb, at 14 years, had already been diagnosed with CF.
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My older son, Nathan, was 18 years old when he was finally
diagnosed with cystic fibrosis. After many years of living and struggling with an unknown ailment, he took the news that he was living with a life-threatening genetic disease with grace. While we both had been waiting a long time to get an answer to what had been plaguing him for almost two decades, I'd been hoping and praying that he'd escape the CF sentence. But, unfortunately, this diagnosis did not come as a surprise to either of us. Perhaps because exactly 35 days earlier, my younger son, Caleb, at 14 years old, had also been diagnosed with CF.
Somehow, Caleb had also maintained his composure upon receiving the news. He graciously thanked the doctors and office staff in the same way that Nathan would a month later. But his reaction was remarkably more relaxed than his older brother's.
As we drove home, Caleb occupied himself by texting his friends. “Do you want to talk about it, Caleb?” I asked gently. “No Ma,” he replied without looking up from his phone, “I'm talking to my friends right now.”
And as soon as we got into our apartment, Caleb busted out into a rap and dance: “Cystic Fibrosis ain't got nuttin' on me. Cystic Fibrosis ain't got nuttin' on me. Cystic Fibrosis ain't got nuttin' on me …” For the next few months, Caleb took his new diagnosis in stride, although getting him to take his medications consistently was initially difficult. Caleb pushed himself and his body. He rocked CF and he rocked it hard. He participated in basketball, running, weight training, pull-ups, push-ups and sit-ups every day.
By the time the summer rolled around, he looked, and must have felt, indestructible. And as he got better physically, he improved in consistency with his meds. Or maybe it was the other way around. Regardless, mentally, he chose to be in a good place and it showed in his overall health status. Soon, he had off-the-charts lung function to prove it. I remember his doctor showing his readings to other doctors and staff with unrivaled excitement and celebration.
Nathan's diagnosis story is different. His brother had already been diagnosed so we already knew what we were dealing with. While Caleb was starting to adjust to life with CF, Nathan was finishing his freshman year at New York University. He had already done the research on his brother's disease: a disease whose symptoms looked all too similar to his own. By the time he sat in the doctor's chair and waited for the results from the blood work, he already knew the life expectancy statistics, the progression of the disease, how you can be fine one day and then suddenly worse the next.
Upon receiving his diagnosis, Nathan expressed those concerns, along with a few others, to the doctor. “What about
insurance when I'm not covered under my parent's plan? How will I afford the mounting health care costs?” He knew, even prior to his diagnosis, that his theater degree would not necessarily sustain him financially. He shared those fears as well, and was told that he should consider transferring to the Stern School of Business at NYU.
But to Nathan -- and most people, I imagine -- the thought of giving up his dreams to accommodate the progressive nature of a disease that he didn't ask for was something that he couldn't comprehend.
Nathan spent the following days wondering what this illness meant for his career and his life. He questioned if he would be able to pursue his passions in theater and art when his meds would cost significantly more than the average person's drugs. He thought about whether he would have to settle for an office job that would provide him with health coverage but wouldn't allow him to pursue his dreams.
Like Caleb, Nathan also struggled with adapting to the
CF therapy regimen. A year later, he was still inconsistent. But
participating in a clinical trial last year prompted a steadiness and routine with his meds that has persisted. Around this time, Caleb also took a serious interest in learning more about CF. While their reactions to the initial diagnosis were very different, they ended up on the same path.
They are both still learning how to live their lives without letting CF take over. Today, they strive to live in the present -- not the past or the future -- because worrying about both is a waste of time.
Mother of two young adults with CF
Born and raised in Trinidad and Tobago, Michelle, at age 20, emigrated to the U.S. She is a single mother to Nathan and Caleb who were diagnosed with CF in their teens. She is also a recent Florida transplant, Broward County Public School Teacher, blogger, and perpetual learner. She fights for her sons -- her greatest successes -- and all touched by CF. She believes that the perceived limitations of CF are never to be accepted. Follow @AbundantBreath on Twitter and connect with Michelle Ann Patrovani on LinkedIn.
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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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