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 knew that I needed to make a change when I began checking on home from the office and checking on work at odd hours from home.
January 21, 2016
Meet Rachel Kinney
Grateful for Who I’ve Become
When my son was born, I took 12 weeks of maternity leave and marched back into work like a boss lady -- never looking back. Before I started working, I was on top of the world, easily balancing my life. Every night, I had dinner on the table by 6 p.m., laundry done and clothes laid out for the next day. I didn't know what people were talking about when they said that it was hard to balance a job alongside being a mom.
The truth is that during my maternity leave I did feel like super woman. Yes, my son, Major, had recently been
diagnosed with cystic fibrosis and I was certainly dealing with grief, but I was very organized. I quickly got into a rhythm of medication refills, scheduling doctor appointments and sterilizing nebulizer equipment. I did expect to go back to work feeling the same way as I did during my maternity leave. I didn't account for 40 or more hours being taken up by other activities after the first 12 weeks!
My very first day back at work, Major was battling his first cold, which meant that on day one I already had to take a long lunch break to run him over to our
local CF clinic. And that was only the beginning. I quickly began to feel like I was being spread too thin. Cystic fibrosis requires frequent phone calls to doctors, insurance companies and mail order pharmacies, as well as trips to the retail pharmacy, more sick days with your child than most and days that you just can't bring yourself to leave home because of your child's persistent coughing. I frequently had to step out of meetings for doctor calls or miss half days because of an appointment.
I began to feel like I had no line between work and home because I was checking on home from the office and checking on work at odd hours from home.
Knowing that my company strongly advocates for work-life balance, I finally decided that I should approach my leader about working out an alternate schedule that could give me one day a week at home with Major. I was already utilizing my flexibility, but it was time to be strategic. We created a plan that worked for all parties involved. I have been using this schedule for almost a year now, and I have finally realized that I will not feel like super woman every day and that's okay. There are still some days that I have to step out of a meeting for an urgent call. There are still days that I need to stick close to home. However, I now feel safe letting my phone ring most of the time when I'm at work because I know I have my day off approaching and can use that time to return calls. I can focus on work when I am at work, and I can focus on my family when I am at home.
While many parents battle to find balance between work life and home life, with
CF care for Major, it felt like I had another layer of stress added to my already full plate. So, I feel incredibly lucky to be able to work for a company that truly supports and advocates for work-life balance.
If you are working parent, you may also be able to have the same flexibility that I do. I encourage you to talk to your supervisor. Maybe your employer can't accommodate an alternate schedule, but they may be able to work with you to get remote access or grant you a day where you can take a long lunch to return calls when doctors are available. If you are searching for a new job, make these conversations about work-life balance a priority and a part of your search. Accepting a job with a new company involves mutual selection, and you should feel confident in asking questions about flexibility to find a fit that works best for both you and your employer.
Now go put on your version of a super hero cape, and start thinking about what work-life balance could look like to you!
Mother of a child with CF
Jaclyn is a mother to her son, Major, who was born with cystic fibrosis. A graduate of the University of South Dakota, she now works in the financial services industry and also runs an online health coaching business. Jaclyn is a state advocate for the Foundation, a member of the CF Parent Advisory Council at Blank Children's Hospital, and an active fundraiser for Great Strides. She also serves as the Foundation's 2019 national advocacy co-chair. Jaclyn lives in Des Moines, Iowa, with Major, her husband, Drew, and their dogs, Eason and Lennon. Follow her blog, MAJOREASON.
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