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 was younger, I thought my cystic fibrosis affected me and only me. I have begun to realize the emotional toll that CF also takes on my family and loved ones.
Chad Lucci, MS, PA-C
October 16, 2018
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There are many facets to life with cystic fibrosis, from a patient's perspective. Not just dealing with the day-to-day difficulties, but the uncertain future, as the disease's progression cannot be predicted. This can lead to a variety of emotions, from anger to depression to anxiety and beyond.
For a long time, I only thought about how I felt about things. As a kid, I didn't realize or care much about how my parents felt about CF; I was just mad at the world that I won the genetic lottery of bad fortune. Then, as a young adult, I turned to remaining stoic and unflinching in the face of the unknown as a way of hiding my CF progression. After I got married, I still held on to the fact that I alone was going through this illness. Only recently have I really started to look at how my illness affects those closest around me: my wife, son, and immediate family.
Every progression or hospitalization can be a roller coaster of emotions, almost like the five stages of grief. First, it's denial that I am sick, which leads to anger that I am in the hospital. Then I try to bargain with my doctors to let me out, probably sooner than I should be released. Inevitably, this doesn't work, leading to some depression. Finally, I accept that I cannot change things for the better. All the while, my wife is right by my side, dealing with the same emotions. Only she worries about our life outside the hospital as well, trying to hold everything together while still putting on a good face for me. It must be exhausting! I didn't see it for a long time.
It's easy to say that I am the one who is directly affected by this disease, going through the pain, shortness of breath, endless hospitalizations, and debilitating illnesses. But, with time, I have realized how much my CF affects those closest to me. They are on the roller coaster with me and are helpless to stop it. They feel all the same emotions, along with the anxiety of what may come next. “Is this the last exacerbation? Will Chad not be able to carry on? What will happen to the life that we built?”
These endless and unanswerable questions can only lead to anxiety. And this anxiety for my loved ones is hidden, one that's not talked about or shared because it seems insignificant in comparison to me and my illness. I can only imagine how they must feel. But the real question is, why we aren't talking about this? I believe the emotional wellness of CF family members should be a focus for CF teams. If those closest to me are having difficulties, won't that affect my mental and physical wellbeing? I think that this should be talked about and discussed, out in the open and not hidden in shame as it appears to be.
Mental health has come into focus in recent years nationwide, and it has become a focus of the CF clinics; every patient needs an evaluation and resources are provided to help if needed. But why not for the spouse or parent? They are just as affected by CF, albeit from the bedside. They stand by and watch and support every day without having control over any of it. It feels only natural that being a co-pilot to this illness would become overwhelming at times. They should be able to share these emotions without feeling judged. We need to embrace these emotions and have these tough conversations.
The CF patient is only as strong as the people around them. If those people are having difficulties like depression or anxiety, then it needs to be addressed -- by the clinics and clinicians that are treating those with CF.
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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. 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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