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 have found my existence as a cystic fibrosis adolescent to be very interesting. This is mostly because in addition to the acne and braces and intense hormonal imbalances, there was always my CF.
August 19, 2015
The Art of Playing with Fire
When Your Perfect Child Becomes a Teenager
Cystic fibrosis always reminded me of an overbearing parent (not that I have any ─ love you Mom and Dad!). CF was always nagging me to take care of myself, prompting me to smoke a nebulizer or pop a pill. Not only that, but it usually did this conspicuously
and in front of all my friends. There would always be a telling symptom of some kind ─ wheezing, coughing, gassiness...
One such example has arisen recently with the rising trend of backyard bonfires. (Maybe it's not a trend, but just that my peers and I have reached an age where we are allowed to play with fire.) I'm not sure what it is, but for some unknown reason, people
my age love fires. I've actually listened to people brag about the quality of their fires, claiming that they can set fire to things far better than anyone else. Personally, I think that fires are dangerous and impractical. Plus, when you attend a
bonfire, you leave smelling like an arsonist.
The bonfire ritual is further complicated by CF. The fire's smoke will seal a CF patient's lungs like an airmail envelope. Thirty minutes after a fire is started, I invariably lose my voice from excessive coughing. People will comment, and I tell them
that I smoked a cigar earlier. This inspires awe in groups of street cred-hungry teenagers. Besides, who can prove that I didn't? I smell like it, I sound like it...
Situations like this arise frequently in an adolescent CF patient's life. They're awkward for many reasons, but the biggest of which is that no one wants to bring the party down by talking about a chronic illness.
With that said, it's alright if you're not comfortable telling people that you can't roast marshmallows because your airways will close or that you can't have a drink because you're diabetic. However, you must formulate avoidance maneuvers.
The most obvious of which is to opt out of get-togethers where your health will prevent you from participating in the main event (i.e. drinking or burning a house down). However, you may be cringing at that suggestion as you read it. So my "have your
cake and eat it too" advice is to compromise. If there's a fire, hang out with the indoors crowd. If there's drinking, find a red solo cup and fill it with water (no one will know the difference, believe me).
In the chronically ill community, the "you can still do everything" message is thrown around a lot. I would love to tell you that it is true. Oftentimes it is. But there will be situations where you have to think of your health. It's the frustrating reality.
Sometimes you can't keep up with the crowd, show up to the party, or start a fire. Does this mean that you have to live as a friendless, lifeless recluse? Absolutely not. It just means that you have to pace yourself and stay upwind of the flames.
Adult with CF
Mara has been living with CF for 24 years. She recently earned her master’s degree in public relations and hopes to continue her work in health communications. In her spare time, she loves reading, baking, and spoiling her dog, Zoe.
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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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