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.
Although becoming a father to my two boys has been one of the greatest experiences of my life, there is a delicate balance between being a parent and having cystic fibrosis. Fortunately, I've found a couple of tips that help.
June 6, 2017
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5 Things We Heard About Partnering in CF Care
When you have cystic fibrosis, you are told to watch out for
germs, bacteria, and situations that could cause you to get sick. The common cold could escalate and -- the next thing you know -- you're in the hospital hooked up to the all-too-familiar IV drip. So, what do you do when you
have CF and two little kids?
Getting married to the love of my life and
becoming a father to our two boys have been the highlights of my 35 years. I became a parent seven years ago and realized from the beginning that there is a very delicate balance between parenthood and having CF. Kids bring so much incredible joy and laughter to your life, but they also bring all sorts of germs (and who knows what else). How can I protect my compromised immune system from a constantly snotty nose, a fever, or a cough when all I really want to do is hold my sick kiddo tight and snuggle him until he feels better?
I don't have all the answers and am constantly learning and re-evaluating to find my own balance. However, here are a couple of tips that I've found helpful over the past seven years:
Ultimately, you cannot keep yourself (or your kids) in a bubble. And, if your kids are anything like mine, they love to play in the dirt, leaves, mud, and whatever else looks fun at the moment. I believe that staying healthy is more about being smart than being overly cautious. Honestly, how many of us parents have been out with our kids and had to do the two-finger or inside-of-the-shirt nose wipe for a runny nose because you didn't have a tissue? All of us. But after the wipe, don't forget to find the closest place to wash your hands.
At some point, everyone gets sick -- your kids, your significant other, and you. So when it happens, do the best you can to provide tender care, while also protecting yourself. Learn to ask for help and to not be afraid to reschedule a gathering when it's in your best interest. I've learned that you can't stop the germs, but you can do your best to contain them.
In the end, building a bond with your child through comfort and those precious moments when all your kiddos want to do is to curl up in your arms makes it all worth it. It's why we become parents in the first place.
Adult with CF
Chad is an award-winning grill master and amateur Lego builder who was born in 1981. He lives in Alexandria, Va., with his wife and two sons. Chad graduated from Wittenberg University, where he tended bar, traveled to Africa, and earned degrees in both history and African studies. In addition to being chair of Tomorrow's Leaders for the Cystic Fibrosis Foundation Metropolitan Washington, D.C. Chapter, he is a member of the Adult Advisory Council and National Advocacy co-chair for the CF Foundation. In addition he participates in the weekly vlog Staying Salty. You can find him playing baseball with his kids, doing CF treatments in his basement, and on social media. Follow @cjriedy on Twitter or Instagram.
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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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