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.
I gravitated toward a career in health care almost without thinking about it. It has been rewarding, but it has cost me too.
Chad Lucci, MS, PA-C
October 17, 2016
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I am a physician assistant, and I have been for nearly 10 years. I have worked in health care for 15 years. All the while I have tried to balance family and career with the daily struggle of cystic fibrosis. Work-life balance can be extremely difficult to navigate, even without a chronic illness. Add CF to the mix, and a career in medicine can almost seem unsustainable.
Medicine has many positives. It has proven to be rewarding, as I have affected many peoples' lives and provided a great life for my family and me.
When I was younger, I was advised not to enter this field, but no one could have talked me out of it. I realize now that my health has declined during my career. I am now almost 40 years old, and I have had many years to reflect on my career. I was recently asked whether I would make the same career choice knowing what I know now. Honestly, I can't say for sure but I can share my story.
Like many cystics in early adulthood, I was a wanderer without any clear direction in life. The nature of a chronic and progressive illness leads one to think that there is no future, and thus, I didn't feel a need to prepare for and embark on a real career. That changed during my early twenties, when
therapies became better and made a longer lifespan possible. So I started to think about what kind of career would make me happy and fulfilled. Where did I turn? To health care, of course!
Growing up in and out of hospitals, they had become a comfortable environment. One gets used to the mixture of cold sterility and warm empathy. I felt that I could give back to all of those who had helped me, and I wanted to bring my unique perspective and empathy to patients. So I decided to become a physician assistant. I burned the candle at both ends, working and going to school for six years before that came to fruition.
When I was finished, I felt a level of accomplishment beyond what I can describe. However, my family had begun to notice the decline in my health and stamina, and made sure that I heard about it. I was oblivious, or naive, continuing to work at a frantic pace out of some need to prove to myself -- and others -- that I was good enough.
I took pride in being a great PA, especially in emergency situations. There is really no feeling like actually saving a life, knowing that your contributions, small or large, directly affected someone and helped to heal sickness or prevent death.
This has all come at a cost. At the root of a health care career is irregularity; the hours, the length of shifts, the pace. Most people work 12-hour shifts. As a result, my
treatments and sleep become erratic, and
exercise became an afterthought. The frequent exposure to
viruses and bacteria haven't done me any favors either. These risks have led to more frequent exacerbations with less rebounding of lung function. I knew that health care would have some impact on my health but I was unaware of the extent. Looking back now, that kind of thinking seems short-sighted and naive. Hindsight is 20/20, I guess.
Since becoming a health care worker, my lung function has decreased by almost half. It's astounding to see the regression on a chart. While this cannot be due only to my career choice, it has compounded the natural decline of a person with CF. Even when faced with this truth, I still feel an obligation to continue practicing medicine, for my patients, for my family and for me.
This is the choice that all cystics will have to make if they are thinking about a career in health care. Are the risks worth the rewards? I cannot say for sure, and surely the experience will be different for everyone. I do know that I have very much enjoyed affecting the lives of my patients, but I now feel a much stronger obligation to stay healthy and happy for my family and me. So I am left with the bittersweet taste of being a physician assistant. Another livelihood may have allowed me my health, but I doubt that I would have felt the same level of accomplishment.
If you're out there considering a career in health care, please protect yourself by wearing masks and limiting your exposure. Make your treatments and exercise a priority, and try to find a work schedule that accommodates them. It can be done, but one needs strict guidelines to reduce the risks of working in health care with CF. I hope my story will serve as both a cautionary tale and inspiration to aid those who may embark on this career.
Chad Lucci, MS, PA-C
Adult with CF
Chad is 40 years old and currently lives in Denver as a physician assistant with his wife, Mari, son, Jackson, boxer, Hendrix, and bulldog, Meatloaf. He was diagnosed with CF at 5 months old, and has overcome countless setbacks and exacerbations to live a quality and productive life. He and his family are avid hikers and bicycle riders, and have embraced the Colorado lifestyle since moving from Chicago. He plays multiple musical instruments, enjoys reading, and is a freelance writer. Check out his personal blog at www.whatalungstrangetrip.com.
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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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