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 I resisted it at first -- and wrestled with what it said about my worth as a person -- going on disability has helped me become healthier, happier, and more fulfilled than I was when I was working.
October 5, 2020
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Raising an Adult (in Training)
Transitioning from a lifelong journey of physical disability to a new chapter of social and financial disability is not how many people plan to spend their early twenties. Even those of us with lifelong progressive illnesses rarely know how long -- if
at all -- we will be able to work before health needs outweigh capabilities. Regardless of how or when, having CF means there's a good chance you won't have many “real-life” examples of disabled young people to relate to. Reworking plans, dreams,
social life, self-esteem, budgets, internalized and systemic ableism, and so much more, all by yourself, can be isolating.
I was somewhat ashamed when I first became disabled at 21. Meeting people was always anxiety-inducing because they almost always asked the cursed question: “What do you do?” What should I say? “Nothing?” “Rest, eat, and do breathing treatments?”
Or the ultimate blunt bummer of a response: “Actually, I'm disabled?” What if they don't believe I can be disabled due to my appearance and age? I can't say I'd blame them, but it never feels good. Or what if they think less of me because I survive
off of taxpayers' money? Should I just lie and pretend I work so I don't have to talk about this for the tenth time today?
But here's the thing: “Disabled” is not a bad word, and it's also not the bummer it sounds like at first. Disability, in the social/legal sense, gave me my life back.
At 21, working 40 hours a week at a call center, I was doing very poorly. I was significantly underweight with very low lung function and had little to no exercise tolerance whatsoever. I was sick more often than I was well, and I was broke and never
able to use my vacation time due to all the work I had to miss. I was asleep most of my non-working hours, leaving me with little time to do extra treatments as needed, prepare and eat healthy meals, or exercise, let alone do things I enjoy or engage
in self-care. My physical and mental health were in near-constant critical condition.
When my medical team first brought up disability, I felt defeated. I was exhausted. I was broke and I couldn't go three months without IV antibiotics,
and now I had to quit my job?! I was angry, afraid, and fundamentally unimpressed with myself. It felt like walking from a well-lit hallway into a completely dark room. I had no idea what to expect. It felt like I just couldn't catch a break. Little
did I know, disability was just the resource I needed to get my health back.
Now, at 24, my lung function has increased significantly. I am at a healthy weight and truly physically fit for the first time in my life due to having the time to truly manage my diet and exercise.
I now get a healthy amount of sleep for the first time in my adult life, and I generally only need IVs once or twice a year. My mental health is far from perfect, but I have the time to truly work on it and do things I enjoy; something I seriously
lacked when I was splitting my time only between work, treatments, and sleep.
Now that I've settled more comfortably into disability, I can see some things I didn't see before. First of all, I see that the inherent “laziness” that internalized and systemic ableism had made me fear is a complete myth.
I still put effort into achieving things just like a working person does; the difference is the reallocation of that effort and energy. I have reinvested much of that energy into myself and my health, and there is nothing lazy about that. I have seen
the fruits of my labor in the forms of feeling better and more energy for self-care and hobbies, both of which are extremely rewarding. I am still a productive person, just in different ways than before and -- frankly -- I'm personally much prouder
of the ways I'm productive now than I ever was at work. This reinvestment in myself and the tangible results that came from that choice are what makes me, dare I say it, proud to be disabled.
Another thing I can see now is that comparing my experience in disability to that of others (disabled or not) was always futile at best and damaging at worst. Being unable to work doesn't mean you aren't independent, motivated, active, capable, or productive
(although not being any or all of those things, some or all of the time, is not a negative thing either). It certainly doesn't mean that you aren't important, interesting, or ambitious. It simply means that now is your time to find out if and how
the definitions of those adjectives have changed for you, and to give yourself the time and patience to figure it out again. Disability is NOT a bad word. For me, it's a truly beautiful thing.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Aubrey is a disabled 24-year-old with cystic fibrosis. She raises awareness about CF, disability, and chronic illness on her Instagram. She values and advocates for rights, respect, and equality
for disabled and chronically ill people. Aubrey lives in the state of Washington with her boyfriend and two cats and is a host on two YouTube channels.
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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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