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.
Although your teenage years can be difficult, they ultimately help mold you into the person you are meant to be -- especially when you have a chronic disease, like cystic fibrosis.
August 29, 2018
5 Things Id Tell a Parent of a Child Newly Diagnosed With CF
How We Explain My Childs CF
No matter what, everyone's teenage years are some of the hardest points in their lives. It's the delightful time of discovering who you are on top of the ever-present hormones that seemingly flow through your body like a tidal pool. And, with the constant
presence of social media and the unspoken pressure to live the best life to ultimately post about on your Instagram, there's no doubt that being a teenager in this day and age can be quite overwhelming -- especially when you try adding a chronic illness,
such as cystic fibrosis, on top of it.
I was only halfway through my freshman year of high school when I became a hospital/homebound student and had to switch to a full-time, online school. Having attended regular school all my life, it was a difficult adjustment, and letting go -- and essentially
mourning the “normal” high school experience my parents and I had always hoped I would have -- was hard.
The most difficult part, however, was maintaining friendships. Many of the friends I had made that first half of my freshman year seemed to have an “out-of-sight, out-of-mind” mentality; once I left school, I stopped being included in things or invited
to hang out with them.
Fortunately, I've been lucky to have a group of tight-knit friends who I have had since childhood and who understand me. They have remained my friends through essentially everything I have had to deal with since my diagnosis, which helped me feel significantly
less isolated during this difficult time.
Still, it was hard when I would be sitting at home or in a hospital room and see all the social media posts of my friends living fun, normal lives.
On the bright side, however, leaving school meant that I was finally able to make my health my top priority, and I started to become a lot healthier. I was more rested, had the time to do breathing treatments multiple times a day, and wasn't exposed to nearly as many germs.
The most important thing, though, was that I could focus on eating more calories more times in a day and was finally able to gain weight. I went from being relatively underweight to finally having a normal body mass index (BMI), which is something I never had in all of my years of fighting CF. I was no longer getting sick as often, had more energy, and even saw my lung function go up by 10 percent.
Despite these positive changes, however, my weight gain came with an additional, negative consequence I had not been anticipating.
At the age of 14, I went from being small and skinny to actually carrying weight. Although I am by no means “overweight,” it's a weird feeling to look in the mirror and see something significantly different than you have in the past, and my self-confidence
dipped a lot.
After sacrificing a “normal” teenage experience to focus on my health, I never knew that the thing I had been working toward for literally all my life would make me self-conscious and cause anxiety. The sad thing was my doctors looked at me so proud and
happy, yet I looked at myself with disappointment. I was blinded by the constant presence of models posting bikini pictures on Instagram, the expectations of “body goals,” and thinking that being skinny and fit was the only way to be happy.
I had never had to deal with body image issues before, so it was a hard thing for me to migrate to in my later teen years. I wrote about it, I talked to friends about it, and I talked to other people who have fluctuating weight issues. But, with time
and gradual acceptance, I realized two simple yet important things:
My body isn't perfect or skinny, and I do still look in the mirror sometimes and struggle with what I see. But, the bottom line is that I'm not in a hospital bed with a feeding tube in my stomach connected to a pole anymore, and I'm not that girl who goes into the hospital and immediately needs 5 liters of oxygen. I'm able to do normal things because of the extra energy
that my body is able to produce, and all of this is accredited to my healthy weight gain.
It also helps to remember that the right friends are out there, and whether you find these people at the age of 3 or 30, the bond of actual understanding and empathy is one that can rarely be broken.
Dealing with normal teenage things is hard enough and cystic fibrosis can definitely add to the burden. The thing is, though, I'm happy I grew up as a teenager with CF. It has taught me so much about life, acceptance, gratitude, and bliss. And now, as
I near my last year as I teenager, I can't help but feel pretty proud of myself and the person I've grown to be.
Young adult with CF
Gabrielle was diagnosed with CF at 3 years old. She is currently a college student in Central Florida and, in her spare time, likes to read, write, act, and cuddle with her two yorkies. Gabrielle hopes to one day advocate for more visibility within the cystic fibrosis community in mainstream media. Follow her on Instagram @gabbypatricia or Twitter @gabbykatharine.
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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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