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 am grateful that I can run and work out at the gym even though I have cystic fibrosis. Still, I can't help feeling guilty that others with this disease are struggling, and it's hard to shake the feeling that one day it could be me.
December 11, 2018
5 Things I Wish People Knew About My Life With CF
Living in Limbo
I've often told people that I'm a bad example of cystic fibrosis. Most people I meet have no idea that I'm “sick,” so when they learn I have this disease, they are confused. If they know anything about CF, they can't believe that I'm not only alive, but that I'm doing so well. If they don't know anything about it, then they get the idea that CF isn't so bad.
Most people know me as the girl who loves Sour Patch Kids and is always at the gym or on the go. They don't see me hooked to my vest daily doing breathing treatments. They don't see me cleaning and sanitizing equipment. And most people don't even notice that I take my enzymes (and vitamins) when I eat -- I've gotten pretty sneaky over the years. No one hears me coughing at night or having to get up for a puff from my inhaler (other than my husband and dogs, of course). They don't see that CF is always lurking in the shadows.
Even with all that, I'm healthy and I feel great. I know how fortunate I am to have the energy and freedom to do the things I want to do, like work out and travel. I read a lot of blogs and follow others with CF on social media. It encourages me when I see people like me going about their business. But I know there is a drastically different side of CF … one that I'm not too familiar with.
I see the stories of other people with CF who are suffering. They are fighting to breathe. Others have taken their last breath. It infuriates me that I'm OK, while there are others battling. I feel guilty that I can run in the backyard with my dogs and others can't walk across the room without oxygen. How can we have the same disease? Why is CF so selective about whom it wants to torture?
Just this year, I know of two CFers who got new lungs. Although this is great and has given them another chance at life, their need for a transplant shows how destructive CF can be.
This disease is not kind -- it is cruel. I know two CFers who passed away. Why them? Why don't I feel worse? Is this something other people with a terminal illness ask themselves?
Although I am beyond thankful, I just don't know why I'm so fortunate. I wonder when my turn is coming. We have some great new medicine, but we still need a cure.
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Adult with CF
Dana was diagnosed with cystic fibrosis as a 1-year-old in 1984. She now lives in South Carolina with her husband and three English Bulldogs. She has been a CF advocate for several years, speaking to groups about CF and fundraising through her team, CF Stinks, at Great Strides events. She enjoys traveling, spoiling her nieces and nephews, cuddling with her bulldogs, and blogging about life with CF. Follow Dana on CF Stinks.
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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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