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.
In an ableist society, sometimes you just have to ignore comments that make you feel worthless for not working. If I had the chance, here is what I would tell people who judge those with an invisible illness.
August 8, 2019
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“You seem fine to me.” “You get to just sit at home all day? You're so lucky!” “I wish I got a permanent paid vacation.” “You're a student? OK, but I mean, like, what do you actually do?”
These are all actual responses I've gotten when I've explained that I don't work because of my health. People have the hardest time understanding why I “can't hold down a job” when I appear to be just fine. Such is the nature of invisible illness and
the ableist society we live in. (If you don't know what ableism is, look it up. Pronto.)
Not having a job is one of my biggest insecurities and also one of the reasons I'm hesitant to share this information with someone I don't know very well. We live in a society that believes if you're not visibly sick, you're not really sick at all. We
also have a way of attaching someone's worth to their ability to work and function normally. And, even when someone has a diagnosis we can see and generally accept, we tend to believe
that if they just try hard enough, they can conquer the disease.
Quitting my job and applying for disability was one of the most difficult decisions of my entire life -- one I did not
take lightly. I lost a huge part of myself when I stopped working. My social life suffered, I felt stripped of my independence, and I began struggling with feelings of worthlessness and depression. I had internalized the messages I'd been surrounded
by -- the ones that told me I wasn't valuable unless I had a job, that I wasn't as sick as I made myself out to be, and that I could work if I'd just put in more effort.
There are a few things I wish people knew about those who can't work because of a disability:
Just last week, I was doing some paperwork that required a letter from my doctor. Of course, when I saw the letter hit my inbox, I read it before forwarding it on. A few parts jumped out at me.
These words have so much weight. I know these things, and the people closest to me know them as well. I know that the best decision for myself and my family is to make my health my top priority. But sometimes, no matter how much I tell
myself I don't care what others think, it's nice to get this kind of validation. It's a reminder that I'm doing the right thing, and that no matter how hard I try, I can't wish or work this disease away.
And, I'd rather not die trying to.
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Adult with CF
Jenny lives in Utah with her daughter, fiancé, two dogs, and a hedgehog. Since both of her older sisters also had CF, Jenny was immediately tested and diagnosed at birth. Jenny is passionate about raising funds and awareness for cystic fibrosis. She has been chosen as a recipient of the Vertex All in For CF Scholarship twice as she has pursued her degree in psychology. Jenny writes about motherhood, living with cystic fibrosis, and more on her blog Lungs N’ Roses and she can be found on Instagram @jenny_livingston.
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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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