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 I listened to the second plenary for this year's North American Cystic Fibrosis Conference, I couldn't help but think of my own experience with CFTR modulators and the positive effects that they have had on my health.
October 22, 2020
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A “new cystic fibrosis” is such a strange concept. For so long, the disease has remained so stubbornly unchanging that I began to build my life around it. There were times when I felt like a jetty in the ocean, getting clobbered by waves day after day.
But this jetty is still standing. It's a good thing too, because I'm getting to witness the victories we've made in recent years.
Watch the full plenary on Facebook Live.
Charts and data are rarely stirring -- especially for someone like me who's more of a right-brain kind of person -- but watching this year's North American Cystic Fibrosis Conference second plenary, "Defining the New CF in the Era of Highly Effective Modulators," was absolutely moving. It wasn't just Dr. Jennifer Taylor-Cousar's obvious commitment to the CF community (although that alone made me misty). What surprised me was seeing
the past year of my life captured in graphs. Of course, these data weren't specific to me. These graphs displayed Trikafta®'s effect on hundreds of CF patients'
lung function. Regardless, I saw my own story in those numbers.
I'm sure we can all enjoy this triumph, but there is still work to be done. As Dr. Taylor-Cousar pointed out, we must continue studying the broader impact of Trikafta on the overall health of people with CF and whether this “new CF” will require the same
treatments as before. I look forward to seeing what we learn, since I myself have been a high-responder to Trikafta.
For my whole life, especially while I was in high school and college, my health had been on a steady and unstoppable decline. You could literally see my FEV1 dipping lower and lower in my medical records. Down, down, down … Then I caught a Hail Mary pass -- Orkambi®. Suddenly,
my decline slowed. My line grew shallower. I was beleaguered, hoarse, and still quite full of mucus, but I wasn't plummeting anymore.
The game had changed. We had made a breakthrough, and more progress was sure to follow. All I had to do was keep hanging in there until there were better, more targeted medications.
This gave me a lot of solace. It gave me hope as I smoked my nebulizers, as I hooked myself up to infusions, and while I swallowed enough pills to choke a horse.
Then came Symdeko®, and that line started to flatten. Steadier, steadier … The hope grew stronger, even through the doctor visits and the airway clearance and the
many hours spent on the toilet. Steadier and steadier …
And then came Trikafta. I had been on it for about two weeks before I went in for a follow-up with my pulmonologist. I was feeling pretty good but was not at all prepared for the news I got in that pulmonary testing lab. I made the respiratory therapist
repeat herself three or four times.
“Wait, what was my FEV1?” I squinted at her monitor.
“93 percent,” she answered casually, clearly not as shocked as I was by the number.
Ninety-three percent was impossible. That was a number I had not heard in this context for a very long time. I believe I was still in diapers the last time my FEV1 was in the 90s. I stared at the graph on the monitor, which showed my lung function
over the past three years. The values had oscillated, moving up and down between exacerbations. Then, all of a sudden, the line rocketed up. I imagined it continuing … up, up, and awaaaaaaaay …
Trying to confirm this wasn't just a computer error, I insisted on a few more trials. When I finally accepted that the machine wasn't lying, I smiled.
I floated out of the room, found my mom in the waiting room, and tapped her on the shoulder. I leaned forward and whispered in her ear, “93.”
There was a very long hug, followed by a shared determination not to cry (I may have been healthy, but I was still Irish!) I could tell the woman sitting in the corner was smiling, despite her mask.
“That's a Trikafta hug!” she grinned.
Mom and I made it up to the lung clinic and into my exam room without waterworks, but when my doctor came buzzing into the room with a grin on his face, all bets were off. “How about that 93???” he asked. In response, I burst into tears.
So I want to join in with Lauren Hunsaker and John and Chelsea Demos, who appeared in the plenary videos, in thanking the people who have worked tirelessly to give us our beautiful futures. We are resilient people, and we have accomplished a lot in our
lives; but now our single greatest obstacle has been broken down, and we are free. We are free to run marathons, get married, have kids, earn degrees, and do anything else we want.
There is still much more work to be done. There are still many without CFTR modulators. There is still a cure to be found. However, this plenary has proven that our work has paid off in wonderful ways. These victories have given us the momentum we need
to make it the rest of the way. To learn more, watch the full plenary on Facebook Live.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Mara has been living with CF for 24 years. She recently earned her master’s degree in public relations and hopes to continue her work in health communications. In her spare time, she loves reading, baking, and spoiling her dog, Zoe.
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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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