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.
Before my daughter's most recent clinic appointment, I took to social media and asked for tips on getting your child to start wearing a mask. Here's what worked for us.
April 23, 2018
How I Use YouTube to Connect to Others With CF
Trusting My Community With the Ultimate: My Son’s Care
The idea that my daughter, Desi, would need to wear a mask first hit me during the thick of the flu season this year.
I wanted to run a few errands but was concerned about exposing Desi to germs and other bacteria. Plus, we had appointments with both our pediatrician and
CF clinic on the calendar, when I knew she would need to wear a mask to reduce her risk of breathing in or spreading germs.
This got me thinking about how I could prepare for these upcoming visits.
When I was working toward my degrees in child life and early childhood education, my studies emphasized the importance of preparing children in advance before an event happens. Research shows that the more education and knowledge you give them on what
to expect, the higher the success rate. This is textbook for Desi.
Anytime that I “role play” a situation with her, give examples, or prepare her for something new, she will respond positively. Even though she is only 2 and a half, my husband, Ross, and I make a point to respect her independence and expect that she will
overcome any challenge thrown her way. Besides, I knew the earlier we could start a routine, the better.
Like some situations, dealing with this from an academic perspective was quite different than living it.
It always astonishes me how many resources are out there on social media -- from both veteran and “new-to-the-game” parents like
myself. Surely, someone out there had faced this exact dilemma.
So, rather than continuing to come up with my own ideas, I took my dilemma to social media with the ask: “How do you help your child start wearing a mask?”
Sure enough, many parents were beyond kind enough to step up and elaborate on what had worked for them or provide any information they had received. Others bravely spoke out and shared that their children weren't interested in wearing masks either, which
was great and made me feel like I wasn't alone in this endeavor.
Even better, all these suggestions were in one place, ready for me to read over and attempt one by one. Perfect!
Tips from social media:
We found that having her favorite baby doll wear a mask during playtime was the simplest way for her to start feeling comfortable with a mask present. Several friends in the CF community sent me photos of their children sporting the mask, which also helped.
We played with the baby doll in a mask for two days until Desi didn't seem to notice it anymore. On day three, she asked for some sweets as a snack, and I told her that if she could wear a mask like her baby, she could have three M&M'S®. That's
what finally did it! She wore her mask for 10 seconds while I counted, cheered, and danced around the kitchen like a lunatic, trying to distract her. Success!
We did this same bit, off and on, several more times before the day of her CF clinic appointment.
The morning of clinic, I chatted with her in the car about who we would get to see that day and, of course, mentioned how I brought her mask that she would wear inside and when leaving. We brought along a tube of M&M'S® minis that we handed her while
getting out of the car. I squatted down to her eye level and explained that she could carry them in herself while wearing her mask. Then, once we were in the room, she would be able to enjoy them. Again -- success!
I do not in any way claim to know what I am doing at all times while on this “CF road trip,” but I will say that I am part of a stellar community who encourages, motivates, and shares all kinds of tricks when a need is posed. For that, I am so very thankful!
Mother of a child with CF
Jamie lives in Atlanta with her husband, Ross, Great Dane, Coley, and daughter, Desi. She completed her undergraduate degree in human development and family studies with a focus in child life and preschool development at Auburn University, and received a master’s degree in early childhood education (specifically Montessori education) at Belmont University. She enjoys spending time in the mountains of North Carolina, appreciates the art of handwritten letters, and is currently working to implement the “Konmari method of tidying” at home. When not at home, Jamie can be found taking an exercise class at Pure Barre, tailgating and cheering on the Auburn University football team, or spending time with local moms of children with cystic fibrosis sharing ideas. To follow more of Jamie and Desi's story, you can find her on Instagram @DrivingMissDesi or visit her online store.
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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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