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 learned early on that I would never live a “normal” life. As I have struggled with feelings of isolation, I'm even more grateful for the supportive people in my life.
April 13, 2020
How Living in Portugal Led to a Late Diagnosis
Facing the Monster: My COVID-19 Experience
I do not like how CF makes me feel isolated.
Everyone craves to fit in. Somehow during childhood our friends convince us being “normal” is the only way to be. We are afraid to differ from the norm for fear of being outcast. We just want others to think we're the same as everyone else. That is impossible.
Many times, I've felt trapped. I used to turn around to take my pills in public for fear that someone would simply ask why I have to take strange-looking pills. I would want to hide my all treatments when people came to my house so I would not hear the
inevitable “what are those?” Even entering college, I was afraid that some of my suitemates would hear my loud vest through my dorm room and
tell me to shut it off.
It is hard to not feel isolated when you have a disease with many complicated aspects. It is also hard to predict how an outsider might react to a seemingly “normal” part of cystic fibrosis. But,
it is so easy to detach ourselves from others because we think they would not be able to understand how we live our lives. Even supposedly mature college-aged students can brush off CF and treat it like it will be gone tomorrow. They can compare it
to another debilitating disease and say CF is not as bad as that one.
They can bring it up like a sore wound and pity me when I do not need to be pitied. I am not ashamed of having CF, I am not upset at the world for giving me CF, and I do not feel powerless.
Yes, having CF does make me feel isolated at times, but not every hour of every day. Not having someone you can talk to in person who understands your exact problems can be disheartening. Non CFers can make comparisons to my breathing by telling me that
I sound like them after five miles of running, or how they could hear me breathing across the track like it is a game of who can breathe heavier. They can tell me that they know what CF feels like after being bloated from eating a large meal. They
can try to make comparisons, but the truth is that the only people who can relate to us are other CFers -- and we can only talk to them online. This lack of personal communication is isolating
and hard on my mental health.
I love how CF has given me such a strong support system.
When I feel most isolated, I reflect on how strong my support system is to help me get through it. Being a quiet little girl who used to barely say two words at my clinic visits, I never expected my CF care team would become a second family. To my amazing, inspirational doctor and positive, caring nurse - you have made me who I am today. I feel so lucky to have CF when I am able to appreciate these special relationships. I am so lucky to have my mom, who
never fails to turn away every time I get my throat swabbed, and my dad, who sits with me as I get my annual labs drawn. And my friends, who would sit with me while my vest would rumble the couch and the TV was on full blast, I do not know how to
thank you enough.
My support system has allowed me to follow my dreams, from encouraging me to keep running every day, to funding my travel expenses to appreciate this incredible world. They have made me feel so much love, even in times of struggle and isolation. There
is so much love to be given and received in the world, and in times when you think there is no way out, there is always hope.
Now, more than ever, it is important to find at least one positive aspect in our common struggles. If we make a habit of only focusing on feelings of being trapped, isolated, or anxious, only those negative forces can dominate. But, if we can somehow
find one thing we are thankful for, we can escape the negative feelings of isolation.
We can do this by appreciating the support of the CF community. Even though we may not be able to physically interact with each other, there are always ways to reach out to the community. Adapting to connecting online is the key to enhancing our interactions
with other CFers. Our community is exactly what we need to feel appreciated, loved, and encouraged by people so similar to us.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Angelica is a student at the University of California, San Diego, majoring in human biology, with the hopes of having a career in the medical field. When she is not busy studying, she loves to run every day along the coast. Angelica is a CFF Ambassador
in her home state of North Carolina and the co-captain of her Great Strides team, Angelica’s Angels. She has also served as a Bid for a Cure speaker at Master Chefs and was the University of North Carolina Children’s Hospital’s CF Ambassador. Follow
her blog, Angelica’s Cystic Fibrosis Prism, and her Instagram @angelicaerock.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails