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.
People often envied my skinniness, but they didn't realize that CF made it difficult for me to want to eat -- or to get enough nutrients from -- the food that I did.
June 19, 2018
3 Tips for Staying Organized When Your Child Has CF
Why I Took a RARE Opportunity to Help Myself and Others
Eating is supposedly easy. Most people would say it's too easy. At some point in history among privileged people, eating became less about survival and more about pleasure. Eating more than necessary, even at addictive rates, is normalized. Yet, we also
worship those who abstain from carbs and fats with awe-inspiring tenacity to grace the pages of Vogue and Elle.
So, perhaps I shouldn't be surprised when people respond to my weight-gain struggles with a longing gaze and the familiar joke: “Wow! I wish I had that problem.” I usually respond with some awkward blend of a chuckle and a sigh. Malnourishment isn't funny.
Many people envy the slender ones with cystic fibrosis who have pancreatic insufficiency, which is characteristic of about
85 percent of CF cases. That insufficiency makes it difficult to digest food and absorb nutrients, like fat and protein. In addition, there are the common CF complications, like constant nausea, crippling delayed gastric emptying (food staying in
the stomach too long), severe reflux, and taste-morphing medication side effects. The rotten cherry on top of this sundae is that -- despite all those obstacles -- some people with CF need double the amount of calories that a healthy person needs
because of the caloric bonfire being fed by sieging lung infections and heavy breathing. It's all a recipe for weight instability that can dwarf even lung problems.
But, CF is an invisible illness, so most people typically don't have a clue what batters a person with CF every day. Some friends saw me as healthy because of my skinniness, not knowing there were days that being nutrient-deprived kept me pinned to my
bed in the morning.
Friends fantasized about eating whatever they wanted “without consequences,” not knowing that, for me, it felt like iron weights were dragging down my lower jaw, while I crammed crumbles of food into my mouth. They didn't know that chocolate cake tasted
like dirt or that pancakes tasted like cardboard. They didn't know I'd spend more than an hour focusing on consuming just 500 calories, only to end up hovering my tear-streaked face over a vomit lake in the toilet.
Eating wasn't always so challenging. I once loved food so much that I wrote restaurant reviews for my school paper and aspired to be a chef. But, my progressive lung deterioration gave root to many of the aforementioned digestive complications. Rather
than practicing cooking, I watched hours of the Food Network, gazing at videoed food and hoping that my appetite would reignite. Sometimes it'd work, sort of, but after a single nibble, my body would reject the food; a mental barrier prevented me
from stuffing it down my throat.
It was demoralizing in ways incomprehensible unless you've experienced the same. That's the thing about appetite loss. There's the misconception that it always means a person doesn't want to eat. But, I desperately wanted to eat. I just … couldn't. My
taste buds and stomach didn't connect with my brain.
Getting a feeding tube in the 10th grade felt like the ultimate failure at the time. It was another
step into being swallowed up by the medical world. For eight years, each night before bed, I poured five cans of Nutren 2.0 -- which is kind of like Ensure®, but with an even more delicious-sounding name -- into a bag, then hooked up the
line from the bag into my feeding tube. Forty-two ounces of liquid fat dripped into my stomach as I slept. I took in 2,500 calories, 115 grams of fat, and 105 grams of protein per night, yet I rarely gained a pound.
I felt defeated. My feeding tube was artificially providing something that humans should instinctually crave. Doctors labeled my malnourishment as “failure to thrive.” That phrase has fallen out of usage, but it took a heavy toll on my psyche: Eating
is an instinctual necessity, so life without food is life without a necessity. When the body doesn't crave food, it doesn't crave life. That thinking is flawed, but it wedged insecurities into the corners of my mind.
I received a double-lung transplant in January 2017. Since then, I've weaned off of my feeding tube and now have an appetite that is charged by prednisone
and an active life. Friends now laugh about how much I eat and post food pictures to my Instagram feed.
While I still struggle to gain weight, at least I'm struggling without relying on a feeding tube. As much of a lifesaver as the tube was for me, I don't miss it.
When people ask what my favorite part of post-transplant life is, I often respond that it's being able to eat enjoyably and without nausea. They think that's absurd. But, if they barfed every day and their food tasted like dust for several years, too,
maybe they'd agree.
If your loved one with CF struggles with weight, have sympathy. Remember it's not a problem they feel lucky to have, and mere mentality does not always remedy it. Eating isn't easy for everyone.
Adult with CF
Brad lives in San Jose, Calif. as a freelance writer and editor. He graduated from the University of Hawaii with degrees in history and journalism. When not writing small business profiles and cystic fibrosis awareness pieces, Brad is serving as president of the Northern California Chapter of The Lung Transplant Foundation. He's also hiking and rock climbing to celebrate his recent lung transplant. Follow Brad at his blog, Adamantium Joy, or on his Facebook page.
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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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