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.
As the first contributor to the CF Community Blog, I was ecstatic when the Cystic Fibrosis Foundation reached out to me about authoring the 500th post. As I look back on all the stories the CF community has contributed over the past three years, I can't help but feel grateful for the opportunity for connection.
November 20, 2018
Getting By With a Little Help From My Friends
Learning Not to Compare Myself to Others When Setting Goals
“As our first blog contributor from the CF community, we wanted to invite you to author a milestone post: the 500th post on the CF Community Blog.”
When you get an email like this, the only answer is an unequivocal yes.
On July 17, 2015, I wrote “Ma, I Got It." It was a blog post about my (then) 24-year-old son, Eric, adjusting to being his own caretaker after I had been the one taking care of him his whole life. In the post, I addressed all the growing pains -- for each of us -- along that bumpy, independent road.
Since then, Eric has married the love of his life, bought a house just a few miles away, found new ways to manage a busy work-life balance between his health and being a financial advisor at Merrill Lynch, and taken strokes off his golf game.
While he's busy pursuing new adventures, I'm still doing what I've been doing since he was diagnosed in 1991: raising funds and awareness to extend his future.
When I was 22, my newborn baby boy was diagnosed with cystic fibrosis, and I was told that his life expectancy was 19 years. My only hope, my only dream, was for my little boy to live.
And then, in 2006, the horrible, ugly truth about what cystic fibrosis can do hit home when his sister, Jena, moved up to heaven due to lung complications. She was only 13 years old.
Forever broken, yet living in an altered normal, I still held on to the hope for my son's future. Today, I'm 50 years old and the life expectancy for a person with CF is 43 years. For that, I am grateful for all the scientific progress that keeps extending the future for Eric and our entire CF community.
Anyone living with cystic fibrosis knows how isolating the disease can be, but the CF community is anything but isolating. Upon meeting anyone with this disease, you immediately have a kindred connection to them; their story may differ from your own, but the common bond goes as deep as the gene itself.
That's why I didn't hesitate to say yes when asked to write this blog post.
Selfishly, it gave me an opportunity to say thank you to the entire CF community at large who, not only contributed hundreds of blog posts, but connected thousands of hearts with each written word shared.
The fact that this blog showcases incredible individuals living with cystic fibrosis, rather than the disease itself, makes it all the more amazing.
In each blog post, we are able to catch a vulnerable glimpse into the fears of a newly diagnosed family, share parental concerns about our children going to school, and even get the opportunity to hear the emotional stories and personal struggles that we otherwise would not have known. The person behind each post gives the reader the gift of insight and the ability to connect, where physical logistics aren't a problem and isolation is no longer defined by the disease.
I'm happy that the CF Foundation has allowed me to contribute in some small way, but the real value and feelings of gratitude come from what this blog community has shared over the years. In our mission and in our stories, together we will make CF history.
Twenty-seven years later, my hopes and dreams have altered. It's no longer about me and my dreams, but the hopes and dreams of all those living with cystic fibrosis. May they continue to navigate an ever-changing CF landscape of never-ending tomorrows, achieving all the hopes they can possibly dream.
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Mother of an adult and child with CF
Margarete is a public speaker, a freelance writer, and the author of Beyond Breathing and See You at Sunset. But, most importantly, she is a mother of two children who were born with cystic fibrosis: Eric, now 27, and Jena, who “moved
up” to heaven in 2006 at the age of 13. Margarete has been a dedicated volunteer for the Cystic Fibrosis Foundation since 1991. She has served as National Leadership Council Member, National Public Advocacy Co-Chair, and National Volunteer Leadership
Co-Chair, as well as chairing local events. As empty nesters, Margarete and her husband, Marc, continue to raise funds and awareness for the Foundation by doing annual Xtreme Hikes, Golf Events, and galas, all in the hope of one day becoming grandparents
to Eric and his wife, Kourtney’s, children. For more about Margarete, you can visit her website.
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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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