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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
Since everyone in my graduating high school class knew each other by name, I'm guessing that everyone knew that I had CF. But it was never discussed. Rarely did anyone bring it up to me or ask me any questions, and that was just the way I wanted it.
February 11, 2016
A Different Meaning for the Word “Love”
How a Freshman Year Elective Turned Into My Career
Being a woman in today's society is hard. There is an expectation that you need to be smart, pretty, well read, in shape, have a successful career, raise a family, have good fashion sense and apply winged eyeliner flawlessly. Being a woman in today's society is even harder when you feel held to all these standards as you simultaneously struggle every day to control your coughing attacks in public settings, fit in daily breathing treatments, regulate your sensitive digestive system and try to just breathe.
I was diagnosed with cystic fibrosis when I was 2 years old, so it's been a part of my life for as long as I can remember. But growing up in a small, wealthy town where everyone was expected to maintain certain standards of conduct, there just wasn't any room for being “different.” If you ever found yourself standing out, you were sure to become the talk of the town.
Since everyone in my graduating class knew each other by name, I'm guessing that everyone knew that I had CF. But it was never discussed. Rarely did anyone bring it up to me or ask me any questions, and that was just the way I wanted it. I wanted people to see the “normal” side of me. I wanted them to see me as the happy, smart, athletic and fun girl that I had worked so hard to make myself out to be so that I could fit in.
I didn't want them to see me running extra miles after practice so that I could try better to keep up with my teammates when my lungs just wouldn't let me. I didn't want them to see me exhausted and struggling to focus in class because I was up all night with a particularly bad cough. I didn't want them to see me taking enzymes before I ate so that there wasn't any obligation for them to ask about them and create awkwardness. And I certainly didn't want them to know that I had cried myself to sleep on the night of my eighteenth birthday because I had googled the average life span of a person with CF and realized that my life was probably halfway over. I didn't want to stand out for being different.
But when I went away to college, everything changed. Suddenly I was in a huge school in a major U.S city where I didn't know a soul and no one knew me. No one knew that I had CF, and this time no one had to know, unless I told them. I decided to join a sorority because I wanted to meet new people to do things with around the campus and city. Going into recruitment and getting to know the girls of all the different sororities, I didn't mention my disease.
I didn't want to be remembered as the girl with the weird disease that's kind of hard to pronounce, so I just didn't mention it.
After weeks of meetings and learning more about my sorority and my soon-to-be sisters, my pledge class had a particularly touching night where we all opened up about ourselves and who we were. This was the first time that I had ever openly discussed my disease outside of my doctors and family. I remember feeling so nervous. My palms were sweaty and my voice was shaking. I was so worried that these girls would think differently of me or think that I was just trying to get attention and sympathy. But once I opened up about it, I received a truly warm and understanding reception by my incredible sisters, and I felt a huge sense of relief. I didn't realize it, but by trying to hide my CF and live up to other people's expectations, I was really only hurting myself. No one thought less of me for having CF.
Opening up to this group of girls was the best decision that I ever made. They accepted all of me, not just the parts that looked good, and they gave me the confidence to be able to open up to others about my disease.
Post-graduation I started my first job and decided not to tell my boss or coworkers about my disease right away. I just didn't feel the need to. However, soon afterwards, I got very sick and had to take some time off to get a PICC line put in. When I went back to work, I immediately told my boss and coworkers that I had CF and was going to do medications throughout the work day. And this time, I didn't have sweaty palms or a shaky voice.
Adult with CF
Lawren grew up in Sparta, N.J., and was diagnosed with cystic fibrosis when she was 2 years old. After graduating from Temple University in Philadelphia in 2015, Lawren moved to Washington, D.C., to pursue a career in government affairs. She currently works in advocacy and policy for the American Society of Clinical Oncology, where she helps to advocate for and promote improved cancer care for patients. In her free time, Lawren likes to exercise when possible, read, and hang out with friends in the city. Lawren has two brothers and wonderful parents who she credits for helping her maintain her health and happiness.
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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.
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