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.
When the news of the Trikafta™ approval came out, I was simultaneously excited for people with CF that would benefit and disappointed that another new medicine is passing me by. But, hearing about the next wave of research into a cure for ALL people with CF has me looking forward to the future.
October 30, 2019
We Are at a Transformative Time in the History of CF
How My Drug Resistant Infection Led Me to Help Steer Infection Research
It's the crack of dawn. I am sitting in my sunroom doing my respiratory therapy -- every day, twice a day for about an hour. Looking out in front of me on this table, I count five different medications and five different devices. I'll be “free” in an hour. I'll still have to deal with my digestive enzymes and diabetes routine every time I eat today, and try to squeeze in a workout before or after work today, but the hardest part of my day is now half-over. This is my routine. It's so rote I could even do it in my sleep.
And, this is a good day. It is one where I “just” need to do my regular treatments and am otherwise healthy enough to focus on my family, my job, and my life. I can honestly say that I'm not complaining about my situation -- just stating the facts. I am grateful that I have these specialized medications and devices to help me maintain (or at least slow the decline of) my pulmonary health.
Better therapies that have become available over the last few decades have kept me alive and healthy well beyond my doctors' predictions when I was born. But for my CF, there haven't been as many advances as one might think. Last week, the CF community celebrated the approval of Trikafta™. This medicine is the latest in a long list of treatments that will eventually benefit most of our CF friends and family members (90 percent, in fact).
But, yet -- dare I say this without sounding greedy or ungrateful -- it is not enough. Too many young lives are being affected by the ravages of CF. Too many patients will not qualify for the new medication because they are already too sick, may not be able to afford the medicine, or, like me, they have rare or nonsense genetic mutations that the drug does not address.
Is there a small part of me that is a bit disappointed to learn about the Trikafta announcement, understanding that the drug is not going to be available to me? Of course, that's human nature.
I've had several friends and family members this week read about the announcement and, very sweetly, reach out to me to see if the new medication is something from which I can benefit. I've had to explain to them that, unfortunately, this particular treatment isn't for me. I don't want them to feel bad about pointing out something to me that won't benefit me. But, I worry that people outside of the CF community don't understand there is still more work to do.
This is why days after the Trikafta approval, I was glad to hear about the Foundation's Path to a Cure, which hopes to find treatments for the underlying cause of CF for EVERY person with the disease.
We must drive progress in the new and challenging areas of science that stand between the CF community and the finish line.
I know this is going to take time. My short- and long-term CF goals are merely to appreciate my current overall very good health (I'm happy to be “elderly” among people with CF -- I'm in my mid-40s). It's important for me to recognize and celebrate the "good" health days or weeks that I experience. I work my tail off to maintain my current health to the best of my ability, so that when the next great drug or treatment option comes out that is available to me, my body and lungs are in the best shape possible to be able to get the maximum benefit from that medication.
Last week's approval was not only a milestone to acknowledge, but also a stepping stone to even greater accomplishments -- AND a challenge to do more and make further strides in the near future. My wife, Amy, and I have been proud supporters of the Foundation over the past several years, and are so excited to be a part of this movement to ease the burden of, and improve the health of, the tens of thousands of people with CF taking on this disease.
I implore everyone to stay in the fight and to join us in any way you can -- through volunteering, advocacy, or fundraising (or all of the above!) until every person with CF has a chance to celebrate the day their breakthrough is approved. Your efforts could truly add QUALITY tomorrows to the life of a child or young adult with this disease. You could help us get to a cure. What better motivation do you need?
Adult with CF
Chuck is a gastroenterologist, who for the ninth consecutive year, was voted by a committee of his peers to Atlanta magazine's "Top Doctors" guide -- a list of top physicians in the metro area. He is a graduate of the University of Maryland and Harvard Medical School. In addition, he serves on the Board of Trustees for the Georgia Chapter of the Cystic Fibrosis Foundation. Chuck lives in Georgia with his wife and their teenage twins. He is an avid sports fan, travel enthusiast, pop-culture buff, and exercise freak.
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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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