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.
What I thought would be a fun trip to the nail salon with my mom let me know I had a bigger problem with anxiety than I thought.
July 11, 2019
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This day started out like all the rest. I woke up, did my morning treatments, ate breakfast, and got ready to go get my nails done with my mom. This is a long-running activity, and it's always a good
day. We get mother-daughter time and we pick out the nail color we will wear for the next two to three weeks. That may not sound very exciting, but to me it's fun. I get to feel out my energy, my mood for that moment, and pick a color that goes with
Someone other than my regular guy was about to start on my nails and, in that moment, my heart began to race, my palms got sweaty. I pulled at my hands and fingers. I started biting my lips, my body shook, and water filled my eyes. For the first time,
my anxiety became a disturbance to my public life. Up until this point, I thought I had everything under control. But it was in this moment I knew it had gotten out of hand.
I knew something needed to change.
Growing up with cystic fibrosis, you learn about all the physical stuff that could happen. You learn about what happens when you get an infection, that hospital stays are inevitable, that doing treatments multiple times a day is meant to help keep us
healthy. But I never thought that anxiety would come into my life the way it did.
When I heard people talk about anxiety, it was never something I thought I would deal with myself. Hospital visits started for me when I was 17. After that, I was constantly in and out of the hospital with infection after infection. I soon developed anxiety
and depression. It began small with just some finger pulling and lip biting.
That day in the nail salon I knew I needed a little more help than I was giving myself, so I reached out to my care team to help me find a therapist to talk with. I am also looking into more methods of treatment like meditation and yoga. This way, I can
learn new ways to control my breathing when I feel my chest get tight and my heartbeat gets faster.
I will try every single thing out there before starting any anxiety medication. Although anxiety medications work well for many of the people who take them, I just know it would not be the best fit for me. Though this was a difficult day for me, having
that public anxiety attack opened my eyes and made me realize that covering up my anxiety is not solving anything.
Looking back, I'm not sure why I decided to cover it up instead of seeking more help and learning different treatments. I know now that it's no longer something I can or should cover up. It needs to be talked about more so that people who need help can
find it, and also know they are not alone.
So many people suffer from anxiety and it can be managed with the right treatment plan. Anxiety is common in the CF community because of all the uncertainty that comes with hospital stays, treatment of infections, and CF clinic visits. But hopefully my
anxiety will decrease with the help of these new techniques and if I happen to have another attack in public, I'll be better prepared to handle it.
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Adult with CF
Starr, 21, lives in Florida with her family and her four-legged baby girl. An online student at Southern New Hampshire University, Starr is studying psychology with the ultimate goal of becoming an abnormal psychology professor. Although currently not working, she considers the gym her part-time job, as she trains for Crossing for a Cure 2020.
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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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