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 am thankful for the relationships I have online with other people with cystic fibrosis. But the flip side of using social media is that I open myself up to the possibility of unkind words or feelings of sadness whenever I log in.
January 8, 2019
Why My CF Clinic Visits Are a Family Affair
Dear Me, It’s Me: Get Your Act Together
I have a love-hate relationship with social media. It showcases the best and worst of humanity and everything in between. But, for those of us living with CF, it's often the only way we have to connect with each other.
Gone are the days of hospital hangouts, support groups, CF camps, etc., because of infection prevention. So, social media provides one of the only spaces for us to gather as a community. It can be an incredibly useful tool to bounce thoughts off one another, seek encouragement, celebrate our successes, or simply vent.
The best uses of social media happen when we connect, support, and inspire one another. The worst uses happen when we cut down our fellow comrades who are just doing the best they can or put others down for having a differing mentality. Our words have power and we should be thoughtful about how we use them. It's been helpful to be selective with the social media groups I join and to adhere to the old adage: if you don't have anything nice to say, don't say anything at all.
There's also a unique byproduct of CF and social media: death and transplant. Even if you've limited how many people with CF you follow, chances are you'll still catch wind of someone who has passed too soon or find out about something that can go wrong after a transplant that had never crossed your mind.
I've worked very hard to live in the moment and not let fears of the future steal my Zen today. It's not that I block out the fear, it's always there. It's just easier for me to place those feelings in a folder of sorts and file it in the back of my mind so I can keep movin' and focus on what is instead of what-ifs.
However, when the CF community loses one of its own, that file gets plopped right on the front desk of my mind. Whether I know the person or not, my heart breaks and tears fall.
I cry for the opportunities they'll never have.
I cry for the pain I know their families are experiencing.
I cry for the pain my family may one day have to endure.
And I cry for the beautiful life I will have to leave behind someday, despite doing everything in my power to stay healthy.
I don't know what the solution is or if there even is one. In the past, I've tried distancing myself from the CF community as a way to limit that sadness. But, the truth is, I've made some incredibly meaningful connections online and I am thankful for the camaraderie I've found.
What has helped me is to vent some of my fears to my therapist. I find I have to allow myself to feel something before I can move past it, and therapy has helped me to do that. Ain't no shame in my game and it does not make me weaker or any less of a positive person for doing so.
At the end of the day, we're in this together. Just because someone may have a different approach or experience with CF, it doesn't make their story any less valid. There's room for all of us. And to those who happen to be facing challenging times, we're here for you.
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Adult with CF
Melanie Abdelnour has a burning passion for humanity and connection. She loves her work serving on various committees for the CF Foundation, Boston Children’s Hospital/Brigham and Women’s Hospital, and the Cystic Fibrosis Learning Network; teamwork really does make the dream work! She leads a mindful lifestyle and loves exploring nature with her son, Myles, as well as writing, volunteering, and spending time with her beloved squad. Mostly, she strives to be a good human and raise a good human.
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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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