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.
It's not a crime to projectile cough, but sometimes it feels like it is.
September 19, 2017
3 Tips for Combatting Aches, Pains, and Posture With CF
5 Ways I Help My Daughter Sustain Her Daily CF Care
I am utterly consumed by my shame. Not a day goes by where I don't remember what I did -- feel the guilt, the remorse. And it wasn't just the sin itself. It was the cover-up. I beg that you refrain from judging me too harshly as I tell my tale. I was young. Still, it changed me.
That day began like any other. I woke up and went about my morning routine. I was a second grader then, and I was full of optimism and virtue. That was before, of course.
I had just gotten my first pair of glasses. With those beauties, I could see the board from my seat all the way in the back of the classroom. This position is probably what allowed me to get away with my crime.
My teacher, Mrs. Butterbee*, was teaching math at the board. I was feeling a bit under the weather, so I was having trouble staying with her. I coughed a few times. Nobody turned their heads. My coughing was commonplace at that point. What my classmates had not been introduced to was my ability to spew projectile mucus.
That's when it happened.
I coughed again and watched in astonishment as a massive mucus plug shot out of me. It sped in a parabola, catching a gleam of the florescent lighting. Then, just like that, I lost sight of it. Where did it land? I frantically looked around. Somehow, I had not called attention to myself, everyone was looking at Mrs. Butterbee. I scanned the potential strike radius, searching … searching …
I found ground zero. The plug had adhered to the hair of my friend, Sally. Oh God, why did it have to be Sally? I distinctly heard a bell toll in my head. Terror washed over me.
I was faced with a major decision. One, I could own up and tell Sally that a chunk of what used to be my insides was now clinging to what looked like freshly styled hair. Everyone would know that I was repulsive, but it was absolutely the right thing to do. I glanced over at a poster on the wall that read, “The Truth is Always the Best Answer.” The words sat below a picture of an orangutan. I hated his stupid, honest face. Two, I could feign ignorance.
I chose two.
I turned back to face the front of the class. I took a deep breath -- much easier now that my trachea had been cleaned out. I raised a brave little hand. Mrs. Butterbee's teacher eyes instinctively found me, all the way in the back.
“Yes Mara?”** she said.
Another deep breath.
“Um, Mrs. Butterbee,” I chirped, “Sally has something stuck in her hair.”
“What?” asked poor, sweet Sally. The teacher's aid flew in with a tissue and gasped at the grotesqueness that was my mucus. I nodded in agreement, like the snake that I was.
“Yeah, I don't know what it is, but it's kinda gross,” I shuddered.
“I don't even know what that is!” Sally exclaimed. Of course you don't, Sally. Of course you don't.
The class was so confused by the incident that they didn't even tease Sally -- a fact that I used to rationalize my evil, sticky crime. I still feel that as soon as I passed the buck on the snot rocket, my shoulder angel threw down its halo and left to pursue a more rewarding career in acupuncture. My shoulder devil has full-reign now.
This is a cautionary tale of wrong-doing, bad decisions, loss of innocence, guilt, and the refusal to address that guilt. So if any of you venture to cough, perchance, to hock a loogie, own up to it. I implore you to lead the virtuous path … at least, when it comes to mucus …
* Names have been changed to protect the innocent
** You already know this is about me …
Adult with CF
Mara is from New Jersey and was diagnosed with cystic fibrosis at birth. She is a Quinnipiac University Bobcat and is studying strategic communications and film. Mara recently served on a panel to discuss CF and the recent developments in precision medicine as a part of a Congressional Briefing in Washington, D.C. She also spoke at the launch of the Cystic Fibrosis Caucus in the U.S. Senate.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails