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.
It wasn't until I got some perspective that I realized that when I rebelled against my cystic fibrosis treatment plan, I was rebelling against myself.
Chad Lucci, MS, PA-C
October 12, 2017
Becoming the Hero of Your Own Story
Maintaining A Healthy Relationship While Raising A Child With CF
All teenagers rebel, it's just a matter of the severity. Whether it's against their parents, teachers, friends, or against the world, there is resistance. With the rush of hormones and changing bodies, teenagers have a brash sense of overconfidence and
invincibility that can lead them toward success or failure as young adults.
For me, growing up with cystic fibrosis made it altogether different. I spent my early teenage years mad at the world and having a general “screw it” attitude. My friends were filling out college applications and planning their futures, but that was the
furthest thing from my mind. I had been given a death sentence, told I most likely wouldn't make it to 20, so what was the point?
That gave me a very bleak outlook on life. Right or wrong, I didn't care about taking care of myself or preventing progression of CF. I started to argue with my parents and doctors about treatments, wouldn't take my normal medications or do my respiratory therapies if not watched. In my mind, I wasn't giving up -- I was just living my life on my terms.
I wanted to go to concerts, party, and hang out with friends, not be bogged down by an illness I couldn't escape. And I certainly did just that, ignoring my body in favor of the moment, the here and now, the experience.
Many nights I would lie down and my body would be angry and revolting, causing severe shortness of breath and coughing fits. But instead of doing the recommended treatments and keeping active,
I did the bare minimum to get by, just to calm the storm for the next day. I had a favorite quote, albeit morbid, from one of my idols, Jimi Hendrix. He said, “I'm the one that's gotta die when it's my time; so let me live my life the way I want to.”
Bleak, I know.
My behavior and habits went on this way for some years, through high school and college. Yes, I went to college! And I wish that I had applied myself
there. Mostly I made decent grades with minimal effort while getting the most out of the college experience.
I thought I wouldn't have to settle into a career, that one day the illness would take over and I would fade to black like the end of a movie. Somewhere along the way, though, I started to think more long-term. It must have been when I was 23 or 24, and
I saw that the available treatments were getting better. The future started to look a little brighter.
I was more motivated to be active. I began hiking and rock climbing and taking better care of myself. I began to feel more normal than I had in a long time, but some irreversible damage had most likely already been done. That's the thing about a progressive
chronic illness, it seems. Once you lose a little bit of function it is almost impossible to get back to that level.
Now, as the years go on, I have to try harder and harder to keep up with the progression. My hospitalizations are more frequent and my therapies are more involved. I live a healthy lifestyle now, but I can't get back what I lost.
I wonder sometimes if the things I did in my late teens and early twenties contributed to this decline or if it's just the nature of CF.
I can't go back and change things, however. I can only forge ahead. If I could talk to my teenage self, I would tell myself that there is a bright future and good quality of life. I'd tell myself that although living in the moment is good, you must keep
one eye on the future and how your decisions will impact the years ahead. I'd tell myself to continue striving to live the healthiest and fullest life possible.
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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