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.
Taking time off from work to focus on your health is never an easy choice. Here is the story about how I made this decision, as well as some tips and advice for navigating working with cystic fibrosis.
February 27, 2018
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I have always been someone who wanted to work. When I graduated with a degree in finance in May 2013 and started my first career job that September, I
was pleasantly surprised to find that working 9 a.m. to 5 p.m. helped me become more compliant with my CF treatments than ever. The days I found myself missing
a treatment were on the weekends when I wasn't on a schedule, and friends were asking me to hang out.
Don't get me wrong -- waking up was HARD most days and I felt exhausted a lot. But, once I arrived at work, I found camaraderie, meaningful work, and goals. I was glad to be there. Overall, work kept me motivated and on a great schedule.
When I was working, Monday through Friday looked almost identical. I'd wake up, do my treatments, go to work, come home, eat dinner, watch TV and hang out with my roommate, do my treatments, and go to bed -- like clockwork. Doing my lung care allowed
me to stay healthy enough to work, and having a work schedule positively correlated with my CF treatment compliance.
Then, in June 2016, my health took a rapid and unexpected turn for the worse. I told my manager that I'd be back to work in one week. In actuality, I was out of work for 11 months. In just a few days, my lungs declined, and I was placed in a medically
induced coma and connected to an external lung machine called extracorporeal membrane oxygenation (ECMO). I was immediately listed for a double-lung transplant,
which I received just days later. I spent four and a half months in the cardiovascular intensive care unit (ICU) at Inova Fairfax Hospital, and did a lot of rehab at home after that.
Once I was able to walk again and my health started to improve, I frequently made comments to my doctors about how I wanted to go back to work. For a while, they said I wasn't ready. But finally, in May 2017, I got the OK to head back to the office. It
could only be for eight hours per week, but it was something.
For two days a week, I went to the office for four hours. Then, I increased it to 10 hours a week in another couple of months. However, I was always stressed about appointments interrupting my work schedule.
I frequently thought to myself, “They have just given me 11 months off from work and now I need to change up my schedule, again, because of an appointment?” I felt guilty. When I'd call a doctor's office to make an appointment, the first thing I would
blurt out was, “It can't be on Tuesday or Thursday until after 2:30 p.m.” Sometimes, the doctors only were in the office on those days and I'd spiral into, “Okay, how am I going to work this out with work?!” Because I was being followed closely by
my medical team, I had appointments scheduled pretty much every week.
I continued to work 10 hours per week until mid-October 2017, when I spent six weeks in the hospital due to complications out of my control. That hospitalization made me realize I needed to focus on ME. I realized I needed to be 100 percent before I started
working again, and that I was actually a little crazy for going back to work seven months after being discharged from my transplant hospitalization and less than a year after the trauma I had been through surrounding my transplant.
The decision did not come easy, though. I cried as I emailed my manager to let him know I wasn't sure when I could come back. But, after I pressed send, a weight was lifted from my shoulders. I no longer would have to worry about scheduling or feeling
guilty on behalf of my company. I had to put my health first, no matter what.
For those of you making a similar decision, don't feel bad if you have to take time off from work. And, always prioritize your health! That being said, here are some tips that I found helpful while navigating the experience of working with CF -- from
managing my schedule to deciding to take time off.
Some tips I have for those living with CF and working full time:
Some questions to ask when making the decision not to work:
Ask yourself if not working is the right decision; you will know.
Adult with CF
Jackie was diagnosed with cystic fibrosis at birth. A native Virginian, Jackie grew up just outside of Washington, D.C. She earned a bachelor's degree in finance from Radford University and went on to start a career in corporate finance upon graduation. Jackie received an emergency double-lung transplant at Inova Fairfax Hospital on June 21, 2016. She spent four and a half months in the cardiovascular intensive care unit, and spent the last year and a half focusing on her health and overcoming obstacles that have come her way. You can follow Jackie on Instagram at @pricelessbreaths, as she raises awareness for cystic fibrosis and transplant and shares her personal journey. You can also find her on her blog, Priceless Breaths.
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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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