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.
I used to be afraid of the thought of participating in a clinical trial for a cystic fibrosis medication. But when my doctor asked me recently if I was interested, I jumped at the chance. My desire to help myself and the CF community finally outweighed my fears.
July 9, 2019
When Anxiety Attacks
Staying Positive After My First Hospitalization
The people who participated in clinical trials and paved the way for cystic fibrosis care are the true heroes.
We will never know the struggles they faced. The same goes for the generation of CFers who will come after us. And so on and so forth.
Medication constantly evolves, and new therapies are always on the horizon. But what does that take?
We know that it takes brilliant, scientific minds and lots of funding to create new drugs and therapies. But oftentimes, amidst the excitement of new scientific discoveries, we forget the most important factor in drug development. The secret ingredient
that makes it all possible … people with CF.
As a person who grew up fairly healthy and “normal” on the outside, I was never desperate enough to jump into testing for potential new CF therapies or drugs. I didn't start doing airway clearance until I was almost a teenager, and I never touched an inhaler until I was in high school. My lung function stayed a consistent FEV1 of 88-91 percent most of my childhood and teenage years. I was fortunate to stay out of the hospital and
off IV therapy until my late teens or early 20s.
In my adolescent years, I often gave samples of my DNA to researchers and earned a Starbucks gift card or two here and there. It was easy, and I was at least doing a little something on my part to advance cystic fibrosis therapy and research without committing
to using my body.
But as I've gotten older, my CF has caught up with me. When I was in my late teens, my lung function started to decline, and I started to acknowledge the disappointing truth that my cystic fibrosis was rearing its ugly head. I had lower energy, lower
lung function, more frequent hospitalizations, and more side effects … My therapy routine started to take more time, my pill intake drastically increased, and I was seeing or communicating with my doctor more than I cared to.
When I was 23 years old, my doctor saw how hard I was working on my health -- doing stronger and more frequent therapies -- and asked if I would be interested in a clinical trial that he would be overseeing for a new CF medication. I can remember saying,
“YES!” without even considering what that actually meant or entailed. I was just so excited that I could try something new to help improve my lung function. My heart sank as I realized that I didn't know what I was committing to.
Then came the intimidating information. I would be taking something that had been tested only in labs, and in some cases, healthy volunteers. And that freaked me out. Questions rushed into mind as my doctor sat down to explain the regulations and requirements for the clinical trial. What if it makes me worse? What if I grow an extra arm? What if I do something wrong to mess it up?
My family and I were hesitant. It's one thing to give samples of your DNA, but to commit your entire body for a drug in testing, that's an entirely different ballgame.
But after talking to my doctor, I made up my mind. If this is what I can contribute to the care of myself and the thousands of other CFers who are also suffering … if this is what I've been raising money for my whole life…if this is an option for me right now, then there was no question I would participate.
Clinical trials have such a stigma attached to them. There is a level of fear (and rightfully so) that creeps into your mind. But with that fear also comes a sense of pride and duty to the cystic fibrosis community. The thought that I've clung to throughout
my experience with the clinical trial has been, “If not me, who?” I push past the fear of what could happen to me and cling to what this could do for the cystic fibrosis community.
I am a believer in clinical trials. I would encourage patient participation when the opportunities present themselves. My doctor wouldn't ask me to participate in a trial if he thought my health would suffer. I'm thankful
for the opportunity that my doctor has given me, and I am even more thankful for the willingness and time dedicated to helping CF stand for “cure found.”
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Adult with CF
Amye, 25, was diagnosed with CF at birth. She is resilient and does not let CF hold her back. She strives to live a normal life and is diligent about taking care of herself and fighting for her future. Amye and her husband, Zach, are youth pastors in north Georgia. They enjoy going to the beach, the mountains, and concerts. She also blogs at amyephinazee.com and enjoys cooking and featuring her creations on her Instagram (@phinazeeeats). Amye's spunk is often contagious, and she works to inspire everyone around her to live the best life they can.
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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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