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.
Cystic fibrosis normally doesn't get in the way of me having a good time when I travel, but on one particular family vacation, it made for a cringeworthy moment.
July 25, 2018
6 Tips for Involving Your Pediatrician in Your Kids’ CF Care
Life on Symdeko™ Three Months Later
I have always loved traveling and taking family vacations. Some of my fondest childhood memories occurred on these trips.
However, one vacation didn't turn out quite like it was planned.
In fall 2003, I was 17, and my entire extended family (40-plus people) went on a mini-vacation to celebrate my grandparents' 50th wedding anniversary. We stayed at a waterpark in Wisconsin Dells.
My parents, sister, and I aren't huge fans of rides and slides, but on the last day there, I decided I would go down the waterslide if Dad did it first.
Dad went down, and then I got in a tube and excitedly went down the slide. I remember it being fast and fun. Then, I felt something on my stomach. I had no clue what it was or what had happened. I wasn't hurt, something just felt weird.
At the bottom, I put my hand over my stomach tube and realized it was missing! I pulled my tankini up a bit and looked. My G-tube had popped and fallen out! With all of these people playing in the water and on the slides, nobody noticed that my stomach
tube was now somewhere in the pool.
I ran over and told my Dad.
“Well, go tell the lifeguard,” he said.
I turned and looked over at the lifeguard. He was gorgeous -- like lights down from the sky, hair blowing in the wind, choir-singing “AHHHHH” gorgeous. (In fact, because of his beauty I later named him after the 80s model Fabio in my head.)
And, here I was -- a nerdy, 17-year-old girl -- embarrassed that my stomach tube is now in the pool (that all three of the waterslides empty into). I look at my Dad like he is crazy and say, “NO WAY! He is too cute! Don't tell him who it belongs to. I'm
going to hide.”
I ran behind a tree and watched as my Dad walked over and talked to the lifeguard. My Dad told me when I was older that he told the lifeguard I was embarrassed and described what my G-tube looked like. Next thing I know, “Fabio” is roping off the entire
waterslide area and shutting down the slides. It looked like something out of a crime show, and people were gathering, starting to wonder what was going on.
I hoped nobody knew it was me that caused the scene or why the slides were shut down. Fabio then swam around the entire pool until he came back up to my Dad with the G-tube (discreetly covered in his hand).
What does my Dad do? Without even thinking, Dad looks over at me (and Mom who is nearby) and yells, “Cheriz, we got it!”
I stayed right behind that tree and didn't move a muscle. Dad brought it over, and Mom took it to the bathroom to wash.
We didn't have any extras on us. I had changed my stomach tube before, but never because it had popped. I had only needed to change my G-tube when it got old and drained on its own. So, we didn't think to bring a spare one with us. I mean, who would of
thought during a weekend trip it would fall out?!
The doctors had told us that if I ever had to replace my G-tube, make sure to do it fast, or it could be hard to find the hole in my stomach. After Mom thoroughly washed the popped-out G-tube, we put it back in. We taped it down really well and talked
about how it was almost check-out time back at the hotel.
But, I was bummed. I had fun going down the slide and wanted a few more chances, so I asked if I could go down again.
Of course, Mom and Dad were never ones to single me out or not let me have fun like a “non-CF” kid. They agreed only if I would go down the two-person tubes, so that Dad could hold onto me, while I had my hands over my stomach to be “safe.” I agreed,
and we went down a couple more times before we checked out and headed home.
Luckily, we had a spare G-tube at home, and everything was fine after that. It was sooo embarrassing when it was happening, but now when I think back, I laugh and laugh. Scary, embarrassing stuff can happen a lot with CF, so I find it helpful to always
have a good sense of humor about it.
Adult with CF
Cheriz lives with her husband, Andrew, near Peoria, Ill., where she is a freelance blogger and stay-at-home mom. Cheriz has taken on several volunteer positions with the CF Foundation, including serving on the Partnerships for Sustaining Daily Care Champions Committee, Community Voice, and the Adult Advisory Council. Cheriz and Andrew have a national Great Strides team and co-lead several CF events fundraising in their community. They are foster parents, and in their spare time, they work on their family blog, MoreThanDNA.org, to spread awareness and CF education.
Share this Post
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.
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