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.
Hollywood often portrays people with serious illnesses as brave, inspirational characters. I don't always feel that way, and sometimes the real "fight" is facing that fact.
July 11, 2016
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I'm sentimental. If it'll make me cry, I'm interested. This is the case for books, TV, music and especially film. My friends have teased me for years about my mawkish tastes.
I spend many of my Saturday mornings at the movies. Though I'll see almost anything, whenever there's a weepy romantic drama in the theater you better believe I'm at the 10 a.m. showing with a backpack filled with tissues and snacks, alongside senior citizens and a few other misguided romantics. I can't resist a good cry, particularly the kind you get from the popular subgenre, a love story in which one of the characters is terminally ill.
In these movies, a healthy person meets a sick person, they fall in love and then the sick one dies. Before his or her death, the sick lover usually is portrayed as brave, bubbly and (ironically) full of life. They're the manic pixie
girl, or boy. They serve to inspire the healthy partner (and the audience), who learns to approach each day like it's their last, to take risks, to "
I know this type of movie is a hot-button topic for some folks. I respect that. I understand the repercussions popular culture can have on, well, culture. But I'm a movie fan, guys! I don't know if I have it in my heart to be angry at Hollywood for giving me
The Fault in Our Stars. I go to the movies to escape for two air-conditioned hours and
things. I don't care if an overemotional, underdeveloped script "manipulated" those feelings from me. Plus, without this genre, what would I do on Saturday mornings?
However, I am still surprised by how people talk about "the sick" in real life. My Facebook feed gives me the impression that we're living in a movie, in a world where all sick people are inspiring. And I like being inspired, too! Hearing about people with CF who are doing incredible things,
like climbing Mount Everest (!), reminds me that this disease doesn't have to hold me back. But when we exclusively tell these types of stories IRL (in real life), do we ignore the complexities that come with chronic and life-threatening illness?
This includes the language people use to detail how we live with our illnesses. We beat cancer, we fight CF, we battle infections -- or we go down swinging. I'm not the first to question why we use
military language to describe the terminally and chronically ill. I'm not offended. There are worse things than being called a "fighter."
But I don't often feel very brave.
When it comes to my disease, I swing between two modes. A lot of the time, I'm apathetic. I was born with CF. I'm used to it. And there's no real choice. I have to
do my treatments, take my pills,
visit the clinic
or face a grim alternative. Once the CF maintenance is out of the way, I go on living my wild and crazy life, like going to the movies by myself on Saturday mornings.
Other days, I'm a mess. I cry. I kick things. I write melodramatic journal entries. My self-pity bleeds into anger, and this is when I'm loneliest. No one likes a bitter sick person. We want the inspirational one, the fighter. So for a long time I didn't talk about how angry I was because I didn't want to make anyone uncomfortable.
I get it. It's unsettling to be around someone when they're angry, especially if you can't fix what's upsetting them (like an incurable disease). I'm guilty of feeling this way, too. But the more I shut down the "bad" feelings, the worse they got.
So I started talking. To my boyfriend, to my parents, to my friends, to
my CF care team. And it helped. I'm still angry sometimes, but I'm dealing with it.
I'm not advocating for a barrage of complaints from the CF community. But I do think a lot of good can come from breaking out of the inspirational role. By accepting the
anger, depression and
that often accompany this disease, I have been able to reconcile with what's happening to my body. I've stopped kicking and screaming and breaking things when I'm alone. Or at least, I've stopped feeling so guilty about all the kicking and screaming and breaking things.
And to those using "brave" to describe people living with disease: please don't misunderstand me! From my perspective, your support is more than welcome. Just maybe consider adding more adjectives to the narrative once in a while. One-dimensional sick folks, though great for a good cry at the movies, don't really exist in real life. At least I've yet to meet one.
Adult with CF
Ali has been a CF advocate for most of her life, raising funds with her family for Team AliKatz. She and her husband, Austin, are on the Cystic Fibrosis Foundation Tomorrow’s Leaders board in Portland, Maine. Ali also works full-time for MamaSezz, helping people feel and eat better with plant-based meal delivery. She’s a graduate of the T. Colin Campbell Plant-Based Nutrition Certificate Program. She lives on the coast of Maine with Austin and their best friend/dog, Sally. Connect with her on Instagram or her blog.
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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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