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.
When I first got an enteral feeding tube as a teenager, I had no idea how many doors it would open for both my health and my involvement with the cystic fibrosis community. Fifteen years later, here's how I'm doing today.
August 10, 2017
Dealing With Awkward CF Situations
Making the Hospital More Hospitable
Some days I am grateful I had an umbrella or an extra stash of
enzymes, and other days for having
traveled abroad with my parents or having met my girlfriend, Emily.
Then, less apparently -- amid life and cystic fibrosis -- I am grateful for pursuing
tube feeding to confront my low weight and pancreatic deficiency as a finale to my adolescence with CF. Sometimes, I wonder how my life would be different if I hadn't done that when I did, almost 15 years ago.
Me, at the age of 15, featured in the Ann & Robert H. Lurie Children’s Hospital of Chicago CF Foundation pamphlet on understanding tube feeding.
At the age of 14, I was small, and I felt small. I stood 5'1" and weighed 100 pounds. My lungs had always been strong, but I continuously struggled with my weight and physical strength. Despite my love of food, constant eating, and support from my family, I was unable to see momentum in my growth charts or meet my growth expectations. It left me frustrated and scared, and I knew I was losing time. By the end of summer, I would be in high school -- and this late bloomer was in dire need of a serious comeback in time for the oncoming of
CF dietitian and I were nutrition partners, and she understood my frustrations, suggesting we needed to meet my growth spurt in time with fat reserves. After seemingly exhausting all conventional practices, she suggested introducing tube feeding to my
Immediately, I said, "No, I don't need a tube." I thought I could hit the calories hard and be fine. Over the next 60 days of some serious grocery trips and calorie binging, I had gained two pounds ...
And so, game-plan tube feeding was on. It was an inevitable decision, and no one would make it for me.
After years of tube feeding and putting on muscle from
exercise, I left pediatrics for the adult clinic at 20 years old in 2009 weighing 170 pounds and standing 72 inches tall.
Now, fast forward to 2017.
From a CF perspective, my life seems to be going relatively smoothly. At 6'2" and weighing anywhere from 185 to 195 pounds, I have muscles in my arms, chest, legs, and shoulders. I enjoy running and lifting weights, and can feel the benefits of pushing myself to run a little harder, dig a little deeper, or do one more rep than the day before.
In 2015 and 2016, I served on the Cystic Fibrosis Foundation clinical care guidelines committee on enteral tube feeding to produce "Enteral tube feeding for individuals with cystic fibrosis: Cystic Fibrosis Foundation evidence-informed guidelines" with the CF community.
Nutrition remains a critical part of my health and component of battling CF, but things have changed. Now, I eat for how the food will make me feel, the quality of the ingredients, and how it tastes. I remain a culinary enthusiast with a passion for cooking, which has become a wonderful creative space for me, in addition to the nutritional benefits it provides.
Interestingly, I no longer feel obligated to pack food down until I am uncomfortable or pick food for the calorie count, despite being tough enough to digest it as is, without pancreatic deficiency. I've learned to choose the foods that leave me feeling energized, and I now know my gut well enough to stop eating when I feel nurtured, as opposed to uncomfortably full.
Eating the right amount and burning through calories regularly seem to be working incredibly well for my weight, nutrition, and well-being. I've been able to find a balance between my daily habits and the needs of my body. Furthermore, the habits and practices that have allowed me to achieve this balance seem to compound on themselves and strengthen the system: good nutrition and a strong chest promotes strong lung function and is associated with the ability to fight infection, strong lung function allows more exercise tolerance, and more exercise promotes more lung fortitude; and on top of it all, I feel well and am motivated to keep the system in spin.
I know that there's no silver bullet when it comes to CF, and I expect rockier roads ahead. But, for the time being, I invest for my future, make good on my past, and enjoy today. Some things I look forward to are growing in my career, continuing to explore my passion for food, and continuing to expand my relationships.
From the wonderful support I have in health and mind, I feel gifted and challenged by the opportunity to enrich the lives of the people around me. And I will continue to work hard to pursue those goals, maintain the best version of my health, and be grateful for all the things life has in store for me.
Adult with CF
Kyle grew up 50 miles north of Chicago, as the middle of three boys, enjoying competitive water skiing and all active sports, with a continuous passion for food and culinary creativity. Kyle attended DePaul University for finance and marketing, and, after studying in Chicago, began to work in sales. His career has taken him to Michigan, New Jersey, New York City, and now Boston, where he currently resides. Kyle enjoys traveling, helping others, and generally "enriched living." Kyle is on the Cystic Fibrosis Foundation Adult Advisory Council (AAC), and has been part of several tube feeding advocacy projects, including a 2016 guidelines panel to develop evidence-informed guidelines in the Journal of Cystic Fibrosis.
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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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