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.
Sometimes during weak moments, when my lung function has dropped despite doing everything in my power to hold off the destruction, I think, “What's the point?” Then I remind myself of the larger goal …
February 3, 2016
“I Love Life”
My Changing Support System
What is your hope for the future?
My response to this question has remained the same throughout the majority of my lifetime. As the years have passed, my reply has ultimately been wrapped in numerous layers of uncertainty, sprinkled with “ifs” and “buts” and clouded by the ambiguity of cystic fibrosis. The reality is that what I truly hope for in the future isn't something I have complete control over, and that makes muttering the answer so much harder. There are days where I wish I had other desires, ones that were within my grasp at this very moment, but my heart continues to circle back and that is how I know it's worth fighting for.
The truth is, I hope to be a mom. I hope for my husband to be a father, and I hope for our trio (family cat included in this math) to become a flock one day. Pregnancy in cystic fibrosis comes with its own set of challenges, and my husband and I have become far too aware of the barriers set in our path.
I have done my research, and I am aware of the ideal pulmonary functions to encourage a healthy pregnancy. I know how many pounds I need to gain in order to be considered nutritionally suitable. I know what would be best for my health while caring for a newborn. This is the way I have chosen to fight the uncertainty. I have decided to use adherence today to motivate me to reach a goal in the future. I believe that I can work each day to be compliant, to tick off small goals on a larger list of resolutions to better my health and become ready for pregnancy. In the end, this is really the only form of control I have in this situation: how I respond to the challenges of family planning.
The truth is though, breathing treatments and pills help me breathe, reduce my pain and make me a more productive human for the day. However, more often than not, there isn't a sense of instant gratification equal to the amount of work I put in to taking care of myself. Swallowing my pills each morning will not suddenly cause our family to grow in size. Breathing treatments and vest therapy won't cure this disease. Sometimes during those weak moments, when my lung function has dropped despite doing everything in my power to hold off the destruction, I think, “What's the point?”
This is when I am reminded of the larger goal -- the one that matters more than the disappointment and failures, and the one that will bounce in my belly when I cough and fall asleep in my arms. This ambition will take planning, hours of treatments and sacrifice, but the result will be eternally worth it. Isn't that what being a good parent is all about -- sacrificing to ensure your child's happiness and safety? I know that because of the difficult path scattered with immense effort set before me, I would inevitably be a good mom.
Will my husband and I become parents one day? Honestly, I don't know -- I don't have the answers right now. What I do know is that if I were compliant only for myself, I would have given up a long time ago. It is my hope that one day I might be called “mom” and that is what keeps me going when all other motivation has faded away.
If I want my world to revolve around the tiniest blessing in the future, right now it must revolve around adherence to the treatments and medications that give me the best possible chance of a future in general. I work every single day to fulfill this vast desire in my life because this is what it takes when you really want something, and I really want to be “Mom.”
Adult with CF
Janeil is a Cleveland native who was diagnosed with cystic fibrosis at the age of 4. She graduated from Case Western Reserve University with a degree in anthropology and continues to complete a master's in public health. Janeil serves on the Quality Improvement Team at her local CF clinic and enjoys sharing the daily experiences of a 20-something-year-old with CF in her lifestyle blog Flowerlungs. In her free time, she enjoys drinking coffee, arranging flowers, and spending time with her husband, cat, and family. Follow @neiljaggers on Instagram and Janeil Jaggers Whitworth on Facebook.
Share this Post
This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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
With more than 70 chapters and offices across the country, it’s easy to find and join a local Cystic Fibrosis Foundation chapter near you.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails