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.
Dance has always been my passion, and it led me to audition for my dream reality show, “So You Think You Can Dance.” Although I never thought anything could top my experience on the show, Trikafta® has exceeded my expectations, and I am feeling better than ever.
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Having cystic fibrosis has been an uphill battle especially when it comes to being active and trying to maintain a healthy lifestyle.
I started dancing when I was 5 years old. My parents put me in dance class because they thought it would help me get a decent amount of exercise, and I didn't seem to be as interested
in anything else growing up. Once I started, I fell in love with it and started to do competitive dance when I turned 6. From there, I would travel all over to dance competitions, take master classes, and train long hours at multiple dance studios.
Dancing, for me, came naturally. I really enjoyed all styles of dance from ballet and contemporary to jazz and hip hop. I truly fell in love with it all. I would constantly talk about how much I loved going to the dance studio. I remember dance was something
that I was completely obsessed with while I was growing up. My conversations were always geared toward when I would be going back the next day.
As I got older, I started to realize that dance is something that I truly enjoy and will stick with forever. I would constantly immerse myself in anything and everything dance-related. I not only trained weekly at my dance studio, but I also watched TV
shows that related to dancing, including “So You Think You Can Dance.” It was my absolute favorite show growing up, and I would watch it religiously every Monday night.
I remember making a promise to myself that -- one day -- I would go on that show and dance when I was old enough.
Fast forward to the beginning of 2019 when the opportunity of a lifetime fell right in my lap. I was at the age and place in my life where I felt like I could give it a shot and audition for “So You Think You Can Dance.” I submitted my audition video
and -- shortly after -- was called for the first round of auditions, which was the non-televised portion in New York City. After making it through, I went forward to the televised producer-round, which was in Los Angeles. I couldn't believe it. I
was shaking with excitement and nerves all at once.
I flew to LA and got to experience my dream reality show. I was interviewed by the show's host, Cat Deeley. I was guided through tons of B-roll and video footage, and I had multiple interviews with producers talking about my CF story, as well as my parents'
perspective. Throughout the experience, I met so many new friends while also getting to do the main event -- performing a solo in front of the judges. That moment was surreal for me. I danced (feeling very winded afterwards) and the responses from
the crowd and judges made it all worthwhile. I got a standing ovation and some very encouraging words from the judges that gave me my ticket to the Academy (which was the next round of auditions).
Right after leaving LA on a high, I had to fly home to a room full of medical tubes and machines. The hospital trip left me sitting in a bed for two weeks instead of training for the next round of auditions. I felt extremely hopeless and weak just waiting
for the chance to train before I had to fly back to LA.
But, CF is unpredictable. I had to just deal with the cards I had been dealt with. After two weeks of being in a hospital bed, I had only one day to prepare before flying back to LA. I was so nervous but decided to just roll with the punches and felt
that whatever happened it was meant to be. Once I arrived, I went through the round of auditions.
After I got eliminated, I was devastated. I knew, however, that this wasn't the end of the road in my dance journey; it was merely the closing of this chapter I had grown to love.
Even though my journey on the show came to an end, there was so much in store for me that year that I didn't expect. After making my “So You Think You Can Dance” debut, I had so much heartwarming and positive feedback from so many people in the CF community
and beyond. People from all over and of all ages were telling me how moved they were and touched by my performance -- those kinds of messages truly made me the happiest. I then realized why I do what I do. To have had the opportunity to share my love
for this art form with so many -- as well as my life story -- is something that is so fulfilling.
After going through that experience, I was filled with gratitude. I didn't really know what could ever top that, but then something came into my life that completely changed it forever. In October 2019, Trikafta®, a breakthrough medicine, was approved for people who have at least one copy of the F508del mutation. It was a day to celebrate science, medicine, and all the donors who have contributed to years of research
development. I remember getting the call one month later that my insurance approved it, and I cried tears of relief and joy.
It has been more than one year since I started Trikafta, and I can truly say I have never felt so healthy in my entire life. The big shift was in my dancing. I started to notice little things like not coughing at all while exercising, laughing, or simply
just doing errands. I found myself not having as many asthmatic attacks and episodes.
When I dance, it's like my lungs are sighing with relief. I am able to maintain a stable breathing pattern -- and no longer have to gasp for air when trying to move -- and enjoy my time at the dance studio.
To say Trikafta has saved my life is an understatement. Trikafta has not only improved my dancing but has created a newfound world for me to live. At the end of the day, life is short and sometimes we just don't know what the future holds. I am thankful
to have had the best CF care team over the years to help guide me on as healthy of a journey as possible. My phrase that I say all the time is, “Breathe easy in hopes that one day breathing easy won't just be
a hope but a reality for all individuals living with cystic fibrosis.”
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Lauren, 21, is a full-time student at the University of Central Florida working on her bachelor’s degree in journalism with a minor in sociology. She was seen on season 16 of “So You Think You Can Dance” in 2019 when she was a contestant on the show,
spreading awareness for CF. Lauren is a big advocate for her local CF Foundation chapter in Central Florida by posting throughout her social media platforms. Lauren has a team (Team Lauren Luteran) that has raised thousands of dollars for CF research
over the years. You can find Lauren on Instagram, Twitter, and Facebook.
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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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