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.
Discovering my passion for acting unlocked my passion for life.
July 25, 2017
Setting the Record Straight About Coughing Up Blood
2 Dry Runs and a Transplant: My Journey Toward New Lungs
Constantine Stanislavski's "An Actor Prepares" was the first book about acting I ever read. Considered the core from which all modern acting stems, it opened my eyes to what professional acting is all about -- the truth, the beauty, the raw nature, the impulse, the creativity. It was the first time the word 'technique' entered my vocabulary. I was in my early twenties when I read this book for an acting class I took on a whim. To this day, I credit that class and that book with helping me to find my drive and passion to pursue acting.
Prior to that class, I was just a kid with cystic fibrosis. I was lost in a world filled with choices, searching for the right answers. I initially tried the typical college business major route. It offered security, but I couldn't shake this feeling that I was going to be stuck doing a job I couldn't care less about for the rest of my life. Other people seemed perfectly content approaching a career that wasn't driven by anything other than fiscal gain, but for me there was still a void in my life.
Fast forward to my mid-twenties. I had moved to New York City and was going to one of the most well-known acting conservatories in the nation, The American Academy of Dramatic Arts. It's a place where, for two brief but hectic years, actors build a base and learn acting technique. Robert Redford, Adrien Brody, Kim Cattrall, and Anne Hathaway chose to work on their craft there.
Those two years were some of the best of my life. I lived in a room about the size of a closet in Brooklyn, struggling like crazy to make ends meet, and loving every moment. Classes never lasted long enough. There was no such thing as homework, just rehearsals, character work, and exploration. I learned more about myself during that time than I ever did in the twenty odd years before. What I didn't expect to get from acting was a better understanding of what having cystic fibrosis really meant to me.
I started to realize that there was a correlation between my CF and my choice to act, and as I kept working on my craft, the connection became clearer. I chose to pursue acting simply because I was searching for a reason to do treatments, to have a relationship that might or might not lead to a family, to fight. Following my passion gave me my reason.
Acting has given me much more than I could have ever imagined. It's given me a greater understanding of what it means to be human, not unlike the same discovery I made about living with cystic fibrosis. CF gave me a greater appreciation for life. My own mortality is something that I live with and face every day, every time I take a pill, every coughing attack I have, every clinic appointment I go to, every treatment I do, I am reminded that this is real and no matter what else happens, in the end, this will inevitably take my life. I have no choice but to look at life differently.
I approach acting in the same way. Those things that most of us take for granted have to be there. When I am doing a scene, the more I can be in that moment, the fuller my acting will be. In doing so, I find more truth in my character and -- more importantly -- myself. The more connected I am to the other actor, the better the scene becomes. When I am truly open and honest, the better my performance becomes, and I am as alive and as present as I can be. Acting enables me to take those things that make us human and connect us to each other -- hurt, love, laughter -- and cultivate them in a story that moves people, including me.
Living with CF gave me a better appreciation for what it means to be alive. It taught me that CF is, in some ways, a gift. It gave me the ability to see the value in a simple breath. The same goes for acting. Art imitates life because it is about telling your story in these circumstances.
Adult with CF
Nicholas was born in Massachusetts. Nicholas began taking acting classes while interning with the Brevard County Manatees, a AA baseball team in Florida. Two years later, he was accepted to The American Academy of Dramatic Arts in New York. Since then he has been acting, starting a production company, chasing a dream, and loving what he does. Nicholas has written a feature film to convey what CF has taught him about life. You can learn more about the film, “The Gift of 65 Roses,” and watch the trailer at www.65rosesthefilm.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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