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 a teacher with cystic fibrosis, I find it no surprise that heading back to school can be a shock to my system. But over the years, I've learned that if I can remember three main things, I can stay healthy through the transition back to school.
August 25, 2016
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In the field of education, there's a common phenomenon known as the “summer slide.” It's used to describe that crippling loss of knowledge and skills throughout the duration of summer, a loss that has the potential to set students back months. As a teacher with cystic fibrosis, I have my own version of the “summer slide” that I try to avoid: a setback in my health that has the potential to take me out of the classroom. I call this the “September Slip.”
Like most teachers, I find that summer is a time for me to rejuvenate. I sleep in, I exercise more and, in general, I take better care of myself. There's a freedom that comes with having the summer off, an openness to my schedule. It's never surprising that I am always at my peak health during these carefree summer days. But once September hits and school starts, it can be a shock to the system. Gone are my days of leisure, replaced instead with a demanding schedule that pulls me in 12 different directions. It's the life of a teacher, and it's easy to get run down. But over the years, I've learned that if I can remember three main things, I can avoid a “September Slip” and stay healthy through the transition back to school.
1. Create a plan of attack
In the week leading up to the first day of school, I sit down and look at this year's daily schedule. By looking at the times, I create my own adjusted schedule for treatments, snacks and medications. Once I know this schedule, I set alarms on my phone since it's easy to get busy and forget; as soon as that alarm goes off, I'm reminded to take care of myself. My plan of attack also involves talking to my teammates and my administrators. When you have CF, you can't be afraid to rely on your village. Mine is an amazing support system that always pitches in when I'm having a rough day on my lungs, need five minutes to fit in a treatment or have to take an unexpected day off. They don't have to, but they always go the extra mile.
2. Train the troops
I spend each day with approximately 50 10-year-olds. There are high-fives and hugs, and along with them, a battery of germs. The only way to survive and thrive is to train my troops. Usually, about an hour into our first day, some of my little darlings determine that there's something that causes me to cough so frequently. (Have you ever noticed how observant children are? Watch them sometime -- it's remarkable!) I try not to overwhelm them with too many details, but I openly discuss with them that I have a disorder that doesn't always allow my lungs to work properly and that I can get sick a bit easier than most people. As they nod with understanding, we talk about how we all need to stay healthy and create a list of things we can do together to create a healthy environment in our classroom. Then, we practice. We practice a lot. We practice washing our hands and covering our mouths. We experiment with fake germs and how they are spread. We review, discuss and then do it again -- because it's important, not just for me, but for all of us. After a few days, they are so well trained that they remind each other of what they need to do. The germs in our class don't stand a chance.
3. Listen, listen, listen
The third -- and perhaps most important -- tip is to listen to my body. Throughout the weeks of transition and busy times during the year, I stop and listen to the messages my body is sending me. If I'm tired, I go to bed much earlier than I normally would that evening. If my weight is dropping, I track my food intake for a week. If my cough or breathing changes, I'm on the phone with my care team for backup. By listening to my body's gentle reminders, I can avoid a more substantial issue down the road.
In a few short weeks, a brand new school year will kick into full gear and bright new faces will greet me at the door. I'm excited to get back to the busy hum of my classroom and know that, together, with my team and students, we'll tackle the transition back to school.
Adult with CF
Jennifer was diagnosed with cystic fibrosis when she was 16 years old. A northern Virginia resident, she spends her days teaching elementary school. As a CF advocate, Jennifer spreads knowledge and awareness of CF as a member of TeamCF and Run to Cure CF. In her free time, she enjoys photography, spending time with her husband and son, and typing up recipes for her blog, Twice Around the Pan.
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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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