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'm self-reliant, after I experienced a trauma, I realized that it was okay to ask for help.
June 5, 2018
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How Living With CF Has Made Me a Better Opera Singer
When I was younger, I spent a lot of time running from cystic fibrosis, and when I was diagnosed with CF-related diabetes, I ran from that
too. I have always gone to a CF care center and my care team has always been amazing. But one of the main things I have learned is that no matter how much other people have tried to help me, and no matter how many resources, programs, articles, and
tips are available, I couldn't benefit from them unless I really wanted to. The one thing I wish I could tell my younger self is, “It's okay to ask for and receive help.” Help like therapy.
It took me 32 years to figure out that the stigma surrounding therapy was wrong.
Going to therapy didn't mean I was weak or crazy, and going to therapy didn't mean that I didn't have an amazing family and awesome friends. Going to therapy simply meant that I was investing in my emotional health, much like I invest in my physical health.
Cystic fibrosis is a huge burden to bear. It is a whole-body, whole-mind, and whole-life burden. But that doesn't mean that it has control of your body, your mind, or your life.
I had been so used to dealing with most things alone -- my family and friend support system excluded -- that I really thought I was doing the best I could. I thought that if I had gotten through the day with a smile, I was fine. It wasn't until I had a
major trauma that it really hit me. Although I don't remember a lot, my boyfriend told me that I woke up and told him to call 911. While he was on the call, I passed out and had a seizure. During the seizure, I coughed up blood -- none of which I
remember. I finally became coherent when I was being placed in the ambulance.
They didn't find any major problems at the hospital, but even so, going home was not easy. That night, I had trouble going to sleep for fear of waking up, passing out, and having another seizure. The next week, I barely slept, and the lack of sleep really
got to me. I needed help. I reached out to friends, family, and my care center, and although I received an outpouring of support, I was still missing a vital mind-tool to help me get through this one thing.
When my nurse coordinator mentioned therapy, I was hesitant. I told myself, and her, that I wasn't crazy (because only crazy people go to therapy?) and that I could get
through this, just like I had gotten through everything else. But the truth was I couldn't get through it alone, and once I realized that, it was like a huge weight had been lifted off my shoulders.
My first session felt weird. I didn't really know what to talk about or how to talk about it. After a few sessions though, I opened up about what made me come to therapy, and as the words came out I started to feel more comfortable, freer. We spend so
much time at hospitals and doctors' offices taking care of our bodies, but what about our minds?
Going to therapy means letting it all out with no judgments. It means letting all of the feelings I have about every single thing in my life come out, so I can release myself from its grasp.
I know what it feels like to be at war with your own body and I know what it feels like when you don't even want to live in your own skin.
Going to therapy taught me that my trauma was a way to catapult me to a better version of myself. My therapist didn't give me the tools to be able to get through it, or to be able to sleep. She pulled the tools I already had out of me by asking the right
questions and then adding on to those tools. Getting help is seriously amazing. I started with sessions every week, and now I am scheduled on an as-needed basis. If I am having a bad week, or CF really gets me down, I find a tremendous amount of comfort
in knowing that my therapist is there and has my back in a completely different way than my boyfriend, my family, and my friends have.
Therapy isn't magic, like a pill that took all my pain away right away. I think of it as food for my mind. I eat different foods so that I can get all the nutrients I need over time. Therapy has armed me with the tools I need so that I am more equipped
to handle what life throws at me. I wasn't “fixed” or “cured” in one therapy session. Honestly, there is no such thing as “fixed” or “cured.” I am human. I make mistakes, and I fail. But the more open I became to the process, the more helpful therapy
became for me.
Adult with CF
Jessika is an adult living with cystic fibrosis and CF-related diabetes. She works from home as a full-time freelance ghostwriter specializing in self-care, relationships, health and wellness, personal finance, and organizational happiness. She is also a professional editor, copywriter, and webmaster. Jessika is a full-time student with a bachelor’s degree in accounting, working towards her master’s in organizational leadership. A full-blown beach bum living on a barrier island on the east coast of Florida, she loves a good book, a good movie, good music, good food, and a good cup of coffee. Jessika spends her free time traveling and at the beach with her boyfriend (thanks honey), in the sun, sand, and in the ocean. She is also a director with the USACFA and volunteers with the GFWC. You can contact Jessika via Instagram, Facebook, or email at firstname.lastname@example.org.
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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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