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 spent most of my life hiding the fact that I had cystic fibrosis. It was only when I fully accepted that CF was a part of me that I quit my self-destructive ways and began to enjoy life.
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I'm 32 years old, and I have cystic fibrosis. I was never open about it until about two years ago. Only my family and a couple of close friends knew of the diagnosis I have had since birth. Only when I had to be hospitalized or do IV antibiotics in my car on my lunch break did my places of employment even know. I love the TV show “Dexter,” so to put it into that context, I will call CF my “Dark Passenger.” Like Dexter's Dark Passenger, it was something to me that was just so unspeakable and
hideous. I hid it from everyone for so long because I was embarrassed by it. It made me feel less than normal, sickly, gross, angry, sad, and extremely self-conscious.
Cystic fibrosis was something I couldn't avoid, but I felt like it was definitely something I could conceal, which was my way to “control” it.
Hiding CF during my childhood was like the stages of grief. I was denying it, even though I was still very compliant. I would deny anything was wrong with me physically. In my late teens to early adulthood came the anger, bargaining, and depression.
I was angry that I had to deal with something no one else did, and the fact that no one saw my struggle made me feel incredibly isolated and alone.
I did all kinds of self-destructive things in my early 20s, determined to live 0-100, hoping that my recklessness would get me before CF did. I wanted to be left alone so people couldn't get to know me, but I didn't want to be lonely, if that makes sense;
so any kind of inebriation was the key to hiding inside of myself. I liken it to the whole “Wow, he was such a fun, funny, and nice person, I would have never known he struggled with that” persona. It was so perfect and so numbing.
When I hit my lows between the highs of partying, I experienced the bargaining and depression -- bargaining with God to turn things around and be better if I could be promised a longer, healthier life. Naturally, depression followed because I didn't even
know what I would spend a “longer, healthier life” doing (and as a matter of fact, I still don't know).
Then one day out of nowhere acceptance came -- so cliché -- but it was like someone flipped a switch. That someone to me was God, and his word was simple: “Get busy living, or get busy dying.” I did just that -- I stopped self-destructing, partied less
and smiled more, and actually got married. Everything from that point began to open up and become much brighter even when my health wasn't so great.
It was when I turned 30 (wasn't supposed to live past 2 years old) that I became proud. I felt strong, healthy, unique, wise, tough, deep, insightful, happy, and whole.
I also made friends with others with CF, something I never wanted to do ever. I found out how quickly I absolutely adored and loved my friends with CF. They are that piece of understanding -- a struggle very few can relate to -- that I was missing
my whole life. From discussing test results and workout regimens to laughing at incredibly stupid things, they are wide and well-rounded friendships.
At a really young age, I lost my first CF friend, my hospital buddy -- we were always in the hospital at the same time and played together (before Infection Prevention and Control Care Guidelines prohibited this) -- so I never wanted a CF friend ever again. Well, when I opened my heart to it again, I had another friend pass away. This time it fueled me to take every opportunity to further awareness and research for cystic fibrosis. I signed
up for every study my doctor told me about, and I joined the Cystic Fibrosis Patient Advisory Board at the University of Texas Southwestern Medical Center in Dallas.
I was offered the opportunity to be an honoree for Dallas Finest 2020, an event to honor young professionals raising money and awareness for cystic fibrosis. I'm proud to see my face and name
on this billboard with the words “cystic fibrosis” next to it for everyone to see and read. It reminds me of just how much I can impact my community, even when I don't feel like I'm doing anything because I'm not a doctor, a nurse, or a researcher.
But look at where I am -- one patient out of more than 70,000 worldwide with the burning desire to see CF stand for “cure found.” Because of wonderful and generous donors, doctors, nurses, respiratory therapists, researchers, and the whole medical
community, I believe along with all the other CF fighters that we will see this day.
I will continue to bring awareness and do what I can for the ones who fight alongside me and the ones who have gone before me. I'd like to encourage others struggling with being open about CF -- or anything for that matter -- to think and get outside
of yourself and just imagine how many people are waiting to hear or read about your struggle in order to get power over theirs.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
I am a 32 year old, living a great life in Dallas with my wife, Laura, and our cat baby, Hugo. I work full time for Firewheel Christian Academy as the marketing director. When I am not working, I enjoy jogging, watching Netflix, and spending too many
hours on Vogue's Runway app looking at current and old fashion shows. I also love music and playing guitar. I was an honoree for Dallas Finest 2020 put on by the Cystic Fibrosis Foundation, and I am member of the Patient Advisory Board at the University
of Texas Southwestern in Dallas. You can follow me on Instagram or email me at firstname.lastname@example.org.
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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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