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 having cystic fibrosis can lead to awkward situations, dealing with it with humor and grace has helped me put them in perspective.
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I have a pretty firm grasp on the meaning of the word "awkward." In an unfortunate flirting attempt, I started to ask a guy how he was doing but instead said, “hewyerder.” I once tried to blow out the candles on my brother's birthday cake and whacked my head on the very solid table. I boarded the wrong school bus going home -- not when I was little, but on the first day of high school. I tried to get into the wrong car before my driving test.
Clearly, I can speak with authority on this topic.
My personality can be described as primarily awkward, and that's before you factor in my cystic fibrosis. I don't know if there is such a thing as a glamorous illness. But if there was, CF wouldn't be it. There are
digestive symptoms, coughing fits, projectile mucus -- all of which can be highly conspicuous.
To handle these things, I think people with CF have to redefine the word “grace.” To a normal person, it means exuding poise at all times. With CF, this is not always possible. Your life is filled with clumsy and unattractive things (you should have heard the coughing fit I woke up to this morning: über feminine). So instead of learning “grace,” we must learn “grace under fire.” You'll learn that if you don't feel like drawing attention to a
coughing fit, you can step into a bathroom stall and become the Anonymous Hacker.
You'll learn that you don't have to explain your disease when you don't want to and most importantly that most people aren't even aware of it until you tell them.
Of course, some of the most difficult situations to deal with are when people do notice that you're sick, and they become verbal about it. I had a professor this past year who would let out an astonished “Ooo!” every time I coughed. I've had countless people comment on my sweaty palms, an odd but prevalent symptom of CF. This is to say nothing of the situations that are profoundly upsetting. Once, my grandfather asked me flat-out how long people with cystic fibrosis live, like I was a goldfish he was thinking of buying so long as I wouldn't float to the top of the bowl too soon.
It took a bit for me to understand that although my grandfather was a decent person, he did not have the capacity to understand chronic illness. This became clear when I discovered how he described me to his friends. I knew that every grandchild was reduced to a singular trait: my brother the veterinarian, my cousin the softball player. However, I hadn't known mine until I introduced myself to one of my grandfather's friends. I said that I was Mara, Chuck's granddaughter. Recognition flashed in his eyes, and he muttered, “Oh, right. You're the one with the problems.” Woah. I have had people say bizarre things about my illness, but this one took the cake.
As strange as it sounds, I found it hysterical. I laughed and shook his extended hand and confirmed that, “Yessir, that's me!” I eagerly told my family about the encounter and it will forever live on as our favorite joke. The moral to the story is that choosing to laugh can be the best coping mechanism.
Of course, that's not to say that feeling awkward about your CF isn't normal. Don't feel pressure to normalize your disease right away, and don't be ashamed that you feel embarrassed by it. Some circular wisdom: Don't feel insecure about your insecurity, it will only make you more insecure. Let yourself feel awkward while you come to terms with your CF. Just know that like any other coming of age story, you will get more comfortable with yourself as you go.
I used to feel like everyone noticed when I was coughing or having stomach pains, or even when I was hitting a rough patch and just looked like hell. The truth though is that most of that was in my head. And for the times when it wasn't -- when someone decided to say something rude -- I learned to be amused, in the same way you are when a kid says something impolite. Even though you're “the one with the problems,” some people are severely lacking in empathy which is much worse. In the cases of both the child and the rude person, you simply understand more than they do.
I have found that for every rude person, there are two friends who stand in my corner. I'm extremely lucky to have a group of loyal, understanding people in my life who don't judge me by my disease. What's more, they appreciate my ability to take it on with a sense of humor. For people with CF, finding out who our friends are is one of the hardest struggles.
It's also the most rewarding.
Adult with CF
Mara is from New Jersey and was diagnosed with cystic fibrosis at birth. She is a Quinnipiac University Bobcat and is studying strategic communications and film. Mara recently served on a panel to discuss CF and the recent developments in precision medicine as a part of a Congressional Briefing in Washington, D.C. She also spoke at the launch of the Cystic Fibrosis Caucus in the U.S. Senate.
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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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