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 mom to two children with cystic fibrosis, I know what works best for them and can identify the subtle signs of how they are feeling before anyone else. This makes me a valuable member of our CF care team.
January 24, 2017
It’s Not Too Late to Get the Flu Shot
Meet Our Seven Impact Grant Awardees
I spend day after day administering insulin shots, enzymes, nasal rinses and vitamins, followed by helping with breathing
treatments, inhalers, more medications, feeding tube prep and hookup. Oh, and let's not forget the planning involved to ensure they have adequate
nutrition and stay hydrated. When the kids get sick, add in an extended, isolating hospital stay, and it feels as though my Herculean efforts to keep them healthy are simply not enough. It is exhausting both physically and mentally.
Despite doing everything in my power, there have been many times when I left the clinic feeling absolutely defeated as a mom. If my kids lose weight or just don't gain enough, their pulmonary function tests (PFTs) drop down. If they have any kind of cough or infection, I tend to take it very personally. After all, it is my responsibility to make sure that their daily treatments are done.
I remember being particularly disappointed in myself after my teenage daughter had gone through a severe episode of
depression during which she lost nearly 4 pounds. At her next clinic visit, the dietitian talked with me for 30 minutes about what I could be doing “better” to help her put the weight back on. Although I knew it wasn't the dietitian's intent, this discussion made me feel like a complete failure. Logically, I know that I'm doing my best, but somehow guilt seems to poison my thoughts and play on my fears.
After nearly 16 years of battling CF alongside two of my children, I have learned that no two people with CF seem to have the same complications and, as a result, CF is challenging to treat. I am not a doctor, but I do know my children better than anyone else and am typically the first to detect when something is wrong. I've learned to tell the difference between a dry and a wet cough. I know that when they are sick, their eyes seem glossy and they look more pale. I found very early on that if we turned on America's Funniest Home Videos during breathing treatments, our kids would laugh so hard they'd start coughing … a perfect way to help them bring up gunk without it being such a chore. I know when my kids' energy levels start to drop, and when they aren't eating as well, they spend longer in the bathroom, their mood changes or their cough starts sounding abnormal (even if it's not yet a full-blown infection).
Sometimes these are subtle changes, but as their mom I know when something isn't right, even if I can't always explain exactly what is wrong. I believe that drawing on this intimate knowledge -- combined with the
care team's medical expertise -- would help all of us treat our children with CF more effectively.
Despite the fact that my fears as a mother can lead me to blame myself when my kids experience problems, I've realized how important it is for me to tell the CF nurses, doctors, dietitians and respiratory therapists on my care team when something isn't right.
As the person standing in the trenches with my children every day, I've learned that even little things that seem like they don't matter actually can. And to the other parents out there doing your best, day in and day out, keep it up. Although it can sometimes be frustrating, the knowledge you have as a parent is invaluable and sharing it can help you work with your care team to give your child the best possible CF care.
Remember, your child with CF needs you most of all.
Mother of two children with CF
Jenn is a single mother of four children between the ages of 10 to 18, two of whom have cystic fibrosis. A Colorado native, she is currently a wedding and portrait photographer living in Denver and manages a studio in Littleton. Jenn and her children are ambassadors for the Make-A-Wish Foundation and Give Kids the World Village. In her spare time, Jenn enjoys mountain biking, reading, cooking, and family movie nights.
Share this Post
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.
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