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.
As a young girl who spent most of her time in the theater, I didn't want anyone to know that I had CF or treat me any differently because of it. When I met the love of my life in college, however, my approach to opening up about my disease began to change.
Jennifer N. Jones
July 10, 2018
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4 Ways I’ve Learned How to “Adult” With CF
Have you ever heard of the phrase, “the show must go on?” It's a common expression in the theater world. When I was a young girl in theater class, I learned that if you stumble over your lines or miss a step in a dance number, just smile and keep going.
When I was younger, I didn't tell anyone that I had cystic fibrosis. Only a handful of my closest friends really knew. When I coughed, I blamed it on asthma or allergies. Since they were more common, they were easier for other people to understand and
didn't require me to explain the rare and complex disease that is cystic fibrosis. No one I knew had CF and I didn't want anyone to treat me any differently because of it. I wanted to keep up the image for as long as I could that I was just your average
girl who loved to sing, act, and dance in every play possible.
I couldn't always run as fast as others and my voice would sometimes get a little raspy when I sang, but I wanted to keep CF behind the scenes. I learned as a young actor that if I forgot my lines on stage or an obstacle presented itself, “the show must
go on.” So, I took that phrase and put it into action. I didn't want to give cystic fibrosis the spotlight or to ever let it steal a standing ovation.
As the disease progressed, however, it became harder to hide. I was eventually accepted as a theater major at the University of Central Florida, where I met the love of my life. Little did I know, this would be a major turning point in how I opened up
I believe that first impressions are everything, so I'm sure you can imagine that I didn't want to lead with, “Hi, my name is Jennifer, and I have a genetic disease.” Then, one afternoon, after weeks had gone by without telling him, my roommate let him
into our dorm room while I was using my nebulizer machine. It was then that I told him about my cystic fibrosis for the first time.
I explained that CF requires me to do breathing treatments to help me breathe -- not wanting to overload him with information right off the bat. I can vividly remember
being quite nervous about how he might react, and I even wondered if the disease would scare him off. Fortunately, he smiled and said, “You're like a sexy Darth Vader.” We both laughed, and I felt so relieved in that moment … overjoyed, really. Like
I could tell him anything and he would accept and love all the layers of what made me, me.
There was even a special bond that came from it, because he surprised me by already knowing exactly what a nebulizer was. He told me that he had asthma when he was young and had used one himself. Fourteen years later, we are still together, and I'm more
in love with him now than I even was then.
Slowly, I began to open up to more and more people. As I did, I found a connection with the ones that I told -- people living with and without cystic fibrosis, who were often facing their own obstacles or going through similar challenges in their lives.
In truth, many of us have something that we would rather keep to ourselves. We all have our own obstacles in life or something that scares us, but we continue to power through.
There is always a feeling of vulnerability when I speak publicly about my CF and how it affects me, and I tend to shed a few tears during the process. It's almost like a release for me, a cleansing of sorts. In that moment, I'm owning my truth, shining
the spotlight on my disease, and unmasking my imperfections all at once. Each time I talk about cystic fibrosis, I'm humbled to be a voice for the 70,000 people living with this rare disease.
Opening up about cystic fibrosis can be hard but bringing it center stage can also be empowering. In a bit of irony, the most effective method by which we can move closer to forever silencing this awful disease is to raise our voices and raise awareness. I'm looking forward to the day when the disease is finally cured, and I can applaud everyone that made that magic happen.
Jennifer N. Jones
Adult with CF
Jennifer is a makeup artist and a registered yoga teacher who was diagnosed with CF at birth. She is a proud University of Central Florida alumna and resides in Orlando, Fla., with the love of her life and their four-legged son, who happens to be a border collie. In her spare time, she advocates for the CF community as a public speaker for the Cystic Fibrosis Foundation and is a volunteer. You can find her team, “Jen's Boogie Busters” -- a support squad of friends and family -- each year at Great Strides. She also enjoys cooking, singing, traveling, and the beach. You can connect with Jennifer on Facebook or Instagram.
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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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