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.
During my five months in Denmark for a study abroad program, I not only learned more about myself and others, but I became more confident in my ability to take care of myself. Don't let CF stand in the way of experiencing that, or any other dreams.
Katie Kirby, MSW
October 26, 2015
Bringing Us Together Online
Teaching Through Example
Imagine this: dazzling green Northern Lights outside of Reykjavik, Iceland; glasses of sangria on top of Montjuic overlooking Barcelona; and countless memories sharing a Danish home-cooked meal with a host family. These are some of my most special moments from studying abroad in Copenhagen, Denmark. Last spring, I packed everything I could fit into two suitcases and a backpack, and I left home to go live with a host family for five months outside of Copenhagen while taking classes in the city. It was scary, exciting and the most incredible five months of my life.
Prior to leaving, normal fears and anxieties plagued me. What if I didn't get along with my host family or like Copenhagen? What if I didn't make friends? What if I missed my life back home too much? Plus, I had the added fears of traveling with cystic fibrosis: what if customs tried to confiscate my medications, and what if I got sick? My family helped me work through the first set of those worries, and my CF team helped me with the second set. We worked together to compile all the documents I needed for three dozen medicine bottles and my medical record in case I needed to see a doctor in Copenhagen. I also packed oral antibiotics in case I got sick, with the understanding that if that didn't work I would contact my care team to figure out a next step and if I needed to see a doctor there. Because I was healthy, we figured seeing a new doctor in a new hospital setting could do more harm than good and possibly introduce me to new bacteria, which definitely was not on my souvenir list. I'm so thankful to say that I stayed healthy and didn't need to take any oral antibiotics while I was away.
In addition to thinking about all the medications I needed, I spent a lot of time thinking about my housing choice. Originally I was going to live in a dorm, but I realized that getting to know the Danish culture was the biggest thing I wanted to get out of my experience abroad. I worked with the housing coordinators for my program and they found me a wonderful host family. The host family knew that I had CF before agreeing to host me, and I tried to explain to them to the best of my abilities what CF was before I got there. But, how do you really explain to someone what it's like to live with CF? I remember being so nervous the first night doing my treatment and them hearing me cough during it. But eventually I got into a routine and they got used to the sounds of my treatments.
Studying abroad was indescribable. I immersed myself in a new culture and fell in love with a new city. I met people from all over the world and deepened many interests in traveling, photography and psychology. My time abroad truly made me feel independent and more capable. Even though I have been living on my own for the last three years at college, my parents were always nearby to help. I know that if I needed them, my parents would have been there within 12 hours. But living in Copenhagen made me more confident in my ability to take care of myself. I was able to keep myself healthy and compliant with my medications, despite having to get used to a new diet, climate, environment, etc.
Here are my top five tips that helped me stay healthy while studying abroad (and traveling internationally):
Katie Kirby, MSW
Adult with CF
Katie is passionate about cooking, reading, traveling, and mental health. A graduate of the Brown School at Washington University in St. Louis, Katie is a licensed social worker who works in college mental health. Katie is part of CF Community Voice, CF Peer Connect, and the Adult Advisory Council for the Cystic Fibrosis Foundation. Katie lives with her husband, Tyler, and their two puppy sons, Talula and Talubb, in St. Louis.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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