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.
I have always been a singer. I have also always had cystic fibrosis. Together, these two distinct aspects of my life have led me down a unique path and allowed me to grow in ways I never could have anticipated.
Elaine K. Malik
June 4, 2018
Realizing Its Okay to Ask for Help
Highlights from the 2017 CF Foundation Patient Registry
I've always been a singer. In fact, many of my earliest childhood memories involve singing, being backstage at the theatre, or holding someone's hand while following the flash of glow tape on the floor.
But, I've also always had CF. My other earliest childhood memories involve doctor's offices or watching my mom stir my enzymes into a tiny bowl of yogurt. I was diagnosed in 1982 at the age of 2 and a half after a two-year search for the cause of my “failure to thrive.”
These two aspects of my life have intertwined and led me down a path that nobody could have foreseen.
Today, I'm in my tenth season singing with a professional opera company in Tacoma, Wash. I made my solo debut with the company in 2013 and am currently singing the role of Olga Kromov in Franz Lehár's comic operetta, The Merry Widow (plus, I'm working behind the scenes as the choreographer). When all's said and done, I've sung in about two dozen operas, soloed at churches in Europe and Asia, and performed in too many concerts to count.
Although many of my professional colleagues still don't know about my CF diagnosis, it is public enough to the point that I'm increasingly being asked, “How are you able to sing opera when you have CF?”
At first, I wasn't quite sure how to answer that question. I've never known life without CF, so I have no frame of reference for what singing would be like otherwise. Asking me how I'm able to sing with CF is like asking a sea turtle how they're able to swim so far with that huge shell on their back … they would probably look at you cockeyed and say, “Why would it stop me? I was made to swim, and this is part of who I am.”
So, I had to flip the question on its head in order for it to really make sense to me: “How has living with CF made me a better opera singer?"
Classical singers work constantly on their breathing technique. Common vocal exercises focus on establishing a solid base of breath support to ensure a steady stream of air, learning to sing progressively longer phrases without interruption. This foundation is what every other aspect of singing depends on -- pitch accuracy, agility, and dynamic flexibility (the ability to fluidly move between soft and loud sounds).
I started taking voice lessons in eighth grade and, as a freshman in high school, won our district solo voice competition and went on to compete at the state level. I was flummoxed by the win and thought it was a fluke. How could I possibly have measured up to all those other people who seemed to sing long phrases so effortlessly?
But, what I didn't realize at the time was that my focus on that one fundamental thing -- breath support -- was giving me a solid base of body awareness and knowledge, allowing me to improve those other parts of my vocal technique.
My lung function is now only 60 percent of what it was back then. Yet, precisely because of the fundamental work I've done on my breath support over the years, I'm still able to sing on an operatic stage. Plus, as my lung function has gradually fallen over time, singing has become an “early warning system” that keeps me aware of changes in my lungs so I can catch exacerbations before they really take hold.
With never-ending auditions, ceaseless rejections, and demanding rehearsal and performance schedules, the life of a singer is not for the faint of heart. Singing professionally can be demoralizing at times, and you have to learn from mistakes and then let them go -- acknowledging that you are valuable as an artist, even when it feels like the world around you doesn't see it.
It takes a level of persistence and tenacity I've experienced in only a few other areas of my life … like managing CF.
Even when you're healthy, living successfully with this disease takes organizing your life to the hilt so that you have enough time for treatments and doctor's appointments, calling insurance companies, exercising, cooking healthy meals, and then doing more treatments. When you get sick in spite of all that hard work, it can make you want to throw up your hands and say, “Why try?”
Whether you are managing CF or singing opera, it takes tenacity and determination to simply keep going.
There's a time to curl up in a ball and let yourself cry over your frustrations … a time to give yourself the space to heal and maybe even reassess your strategy and priorities. But, at the end of the day, you have to stick with it and keep going. It's the only option, really, because what's the alternative?
When I was born, the average life expectancy for those with CF was the mid-to-late teens. Nobody back then would have expected me to live this long, much less be singing opera.
This success is due in no small part to my CF care team who eagerly and creatively works with me to find ways to tailor my treatment regimen to my unique lifestyle, and to the countless people who have supported me in my lifetime -- who I lovingly dub the “cast of thousands” in the big picture epic of my life.
With this sense of gratitude always in the back of my mind, making music becomes a joyful celebration of these gifts I have been given. And an audience can pick up on that, even if they don't know why.
When I put all of that together, I can't help but wonder if my successes thus far have come not in spite of CF, but because of it. What would you decide to do with each day, each breath, if you weren't sure how many you had? Because that's not just true for me; it's true for everyone.
Elaine K. Malik
Adult with CF
Elaine, better known as Katie, is an opera singer, choreographer, voice actor, and freelance writer based in Seattle. Katie's travels have taken her around the country and the globe, on solo tours in Europe and Asia, and on multiple trips to Sweden --
where her inspirational story captured the country's heart on the top-rated, International Emmy-winning TV series, Allt för Sverige. She is also a registered yoga teacher and creator of a “Yoga for Cystic Fibrosis” video series for Pactster.com
in collaboration with the Cystic Fibrosis Trust. Katie is the founder of CF Yogi and a recipient of the Foundation's 2018 Impact Grant. She holds a BA in vocal performance and music theory from Seattle
Pacific University, where she received the Philip J. Mack music scholarship and graduated magna cum laude. You can connect with Katie on Facebook, Instagram, Twitter, and LinkedIn, or visit her website, katiemalik.com.
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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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