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.
I used to keep my cystic fibrosis treatments hidden from my in-laws. It was the wisdom of my niece that helped me to bring my CF out into the open.
September 11, 2017
Fulfilling My Sister’s Un-Bucket List
What’s Next for the CF Community and Health Care Reform
The way I tackle cystic fibrosis treatments and therapies around my in-laws has changed and grown during my marriage.
In the beginning, I hid myself away in seclusion, but lately, I've come out into the open -- a decision that I feel has helped strengthen our relationship and their understanding of life with CF.
Growing up, CF treatments were as much a part of our family routine as homework or piano lessons. No one would bat an eye at the pill bottles on the kitchen table or
the freshly sterilized nebulizer cups that littered the counter. My vest lived front and center at the family computer (an enticing way to ensure my compliance). CF was simply part of our norm, and it didn't really occur to me that someday I'd become part
of a family where it hadn't been.
When you get married and join a new family, you already feel like the weird one. Add CF into the mix, and it can be a bit much to handle, even at the best of times. I was insecure and vulnerable in a way that I never had been before. I wasn't sure how
everyone would react to medical machines and pill bottles, so I avoided it. CF wasn't a topic of conversation, and I didn't invite it to be one.
I was afraid to find out what my new family members knew about CF, and was even more terrified to potentially face their disappointment when they fully understood the realities that may lie ahead.
When my husband and I would visit, I'd stash all of my stuff in a back room, far removed from family activity -- certain, in my own mind, that I would disrupt the hum of normal life if it were anywhere in eyesight. I'd quietly slip away for treatment
and let everyone carry on without me. I thought if I wasn't there, they'd be spared from addressing the coughing elephant in the room.
It stayed that way for quite a while, and to be honest, I can't recall that first moment when I left everything out in the open. It's likely that it took place late one Friday evening after hours of travel, when my road-weary self was too tired to care
much. While that exact memory is hazy, the day that followed shines in radiant clarity. I was in the middle of hefting everything to the downstairs bedroom when my niece, no older than 7 at the time, came bounding in and asked what I was up to. As
I explained that I was moving everything downstairs to be out of the way of everyone, she plopped herself down beside my vest, looked at me thoughtfully, and said, “Well, it wouldn't bother me. Actually, it might be neat to try it. Everyone could see then! It probably wouldn't bother them either.”
And you know what? She was right. I stopped moving all of my medical “baggage” that day, and every day that followed. My niece's words served as the catalyst for where our family is now. Leaving all of my big equipment in plain sight led to questions,
dialogue, and understanding. My new family learned which things did what, the time involved in maintaining my health, and why I always seemed to travel with so much
stuff. In return, I learned that they wanted to know this aspect of me better and be able to support me through these challenges.
These days, I feel right at home again with my CF, regardless of my surroundings or company. Nebulizer cups reside on the counter once more, and treatment time simply means arranging ourselves so that I'm near an outlet. And as for that coughing elephant
in the room? He sits down right beside me, and we make memories with the family that loves us, together.
Adult with CF
Jennifer, 36, was diagnosed with cystic fibrosis when she was 16 years old. A northern Virginia resident and Pittsburgh native, she spends her days teaching elementary school. Outside of the classroom, Jennifer focuses her energy on supporting other moms
with cystic fibrosis throughout their motherhood journeys. She enjoys cooking, writing children’s books, and memory keeping. Above all, she loves spending time outdoors, hitting the trails with her two dogs, husband, and sweet son, Henry James.
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