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 person with cystic fibrosis, I struggled all my life to gain weight, despite eating a high-calorie, high-fat diet. Once I started Trikafta® and my weight increased to normal levels, I had to learn a new, healthier way to eat.
Lauren Bombardier Weeks
November 20, 2020
How I Sustain My Daily Care
A Late CF Diagnosis Explained Everything
All my life with cystic fibrosis, I had always been told to eat more fat, more calories, and more food in general.
Life was a never-ending battle to keep the pounds on. When I got sick, the first symptom was a loss in appetite and, soon, the pounds would shed off me like a snowman melting in spring. No matter what I ate -- McDonald's chicken nuggets with a quarter
pounder, ice cream, cookies, candy, pizza - I remained at a constant range of 100-110 pounds soaking wet.
Whenever anyone lamented about how fat they were and commented that they wished they could eat anything they wanted and stay trim like me, I always cringed inside. I thought, “You wouldn't say that if you knew what it was like.” I hated my skinny arms,
wide rib cage, bony butt, and distended belly. I hated that unless something was an extra small petite, it would hang off my body in all the wrong places. I longed for a butt to hold up my pants, for sculpted arms, and for my jeans to hug non-existent
Soon, I started taking Orkambi®, then Symdeko®, and with each new drug came its own weight milestones. Suddenly, my jeans
started filling out, and my belts collected dust in my closet. And once I started Trikafta®, my weight left the teens, creeping up to 120
... then 125. Suddenly, I was at a healthy weight for my 5 feet.
After years of struggling to gain weight, one would think that reaching this new milestone would be met with appreciation and celebration. But American society celebrates thinness. People stopped commenting about my weight -- finally -- but as I scrolled
Instagram and TikTok with influencers in their crop tops and yoga pants, I longed for a time when my body met those standards. In the mirror, I noticed rolls and cellulite for the first time.
I had the butt to hold up my pants, the curves to fill out my jeans, the arms that were no longer stick thin, yet I was still unhappy.
Suddenly, I was the person lamenting about my weight. I started tracking my calories, even embarked on a 1,200-calorie diet in an attempt to lose a few pounds. I can't count the number of “before” pictures I have of myself before embarking on a new
workout regimen and eating plan. Soon I would get too hungry, fall off the wagon, and go back to my old ways -- eating whatever
I wanted like I had been eating all my life, binging on entire bags of candy or chips -- and the scale would go back up.
One day on TikTok, I discovered a registered dietitian who preaches about intuitive eating, a lifestyle founded on the premise that something like 95 percent of diets fail and result in people gaining back the weight or gaining back even more than they
lost. Intuitive eating encourages you to give yourself unconditional permission to eat what you desire when you're hungry and stop when you're full. It stresses the importance of moving your body in a way that you enjoy, nourishing your body with
gentle nutrition, and loving your body for all it does for you, regardless of its size. At first, I was skeptical. Isn't it unhealthy to just eat whatever you want? Surely, I would eat McDonald's for every meal if that were the case.
I soon found myself following more people on social media who had adopted intuitive eating. They seemed so confident, so enlightened, and so free from the clutches of diet culture, which I had only begun to dip my toe into and was already causing me so
much distress, not to mention hanger. When I talked to my therapist about my newfound disdain for my body, she encouraged me to read the book, “Intuitive Eating.” Maybe, she said,
it could help me to have a more neutral relationship with my new body size.
Reading “Intuitive Eating” and its related workbook opened up a world of possibilities for me.
Every free moment was spent inhaling this new gospel. Suddenly, food wasn't something to be feared but embraced.
Usually, I avoided buying what I used to call “junk food” like chocolate, chips, and ice cream because I didn't think I had the self-control to avoid binging on it. Armed with my new principles, I bought a bag of Ghirardelli caramel squares. To my delight,
I could eat just one a day and be satisfied, leaving me plenty to enjoy for a couple of weeks. And on the days I wanted more than one, I ate it with zero guilt. (Although this way of eating worked for me, I encourage you to talk to your care team
before trying a new diet.)
I learned which foods make me feel alert and energized, which foods fueled my runs and workouts, and which made me drool with enjoyment. I unfollowed any influencer that sent me into a comparison trap and found body-positive women who embraced their imperfections,
dancing around in crop tops with bellies that looked like mine. I stopped trying to squeeze into my extra small clothing, donated much of it, and ordered new clothes that fit and flattered my new body.
It hasn't all been easy. I still glimpse at my larger belly in photos and when I look in the mirror, I find myself dreaming of a flatter stomach. Intuitive eating encourages you to throw away your scale but years of obsessing about the number on the scale
has made it difficult. Although I'm not tracking calories anymore, I still find myself doing mental calculations after a day of eating. Sometimes the TikTok algorithm sneaks diet culture posts onto my feed and thoughts of cutting back my calories
But, unlike diets, intuitive eating isn't a process that demands perfection. Every day I learn something new about myself and make steps toward appreciating my new body. And no, I don't eat McDonald's every day!
The other day, a memory came up on my Apple Photos with a picture of myself from a past summer wearing a tank top and shorts. I was alarmed at how small I was all over -- my face, my legs, my arms, my belly, which I probably thought stuck out too much
that day. An onlooker probably didn't know what was going on inside my body, but all I could see in that photo was a person suffering with CF. In that moment, I realized how much I have to be thankful for, as I am not struggling with CF anymore, and
my body represents that. This was my before picture, before Trikafta, before strength, before control over my life, before newfound health, before a larger, more nourished body. I realized then that there's no reason to strive for that skinny
body anymore. I am so grateful for the health my new body represents, thanks to everything I've learned through intuitive eating.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Lauren Bombardier Weeks
Adult with CF
Lauren is 27 years old and is from Massachusetts, where she enjoys running, hiking, and skiing with her husband, Kyle. She works full time in human resources for a nonprofit focused on improving education and health worldwide and is the author of the blog, “I Have CF, So What!?” Lauren also is working on her first book entitled, “Growing Up Sick,” which details how her parents gave her the strength to live her life despite CF. Read her blog, at http://thesowhatlife.com.
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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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