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.
Taking a step back and taking a break from social media helped me to realize that it's okay to have a definition of health and wellness that looks completely different from anyone else.
February 13, 2019
Realizing the Power Behind My Voice
How CFTR Modulators Changed My Reality
Health and success are not a “one-size-fits-all” concept, but for me it certainly felt like it was for a long time. With social media at the forefront of everything, it was impossible for me not open Instagram, Facebook, or even my news feed to see what was trending in health and success. My generation is obsessed with being disease and antibiotic-free, having six-pack abs, and burning as many calories as possible. My generation is also obsessed with making more money and more money and sacrificing everything for work. Don't get me wrong, there isn't anything wrong with any of those things. On the contrary, I think it is amazing how hard people work and how much people care about their bodies. But I fit into a small group of people who won't ever live up to the hype of societal health and success and sometimes it really gets to me.
It seemed like with every login to social media, I was hard-pressed to find someone that I could relate to. Honestly, even people within the cystic fibrosis community inadvertently made me feel inadequate. Am I working out enough? Am I eating healthy enough? Am I the only one who missed a morning treatment? There is no room for error on the internet, and sadly, some errors are even glorified. But in real life, mistakes are hard. And for me, some mistakes land me in the hospital.
The first thing I did to ignore societal norms for my health and wellness was to ignore social media. That's right. I deleted every social media handle for years. I went from posting every happy and sad moment to posting nothing. I went from getting my inspiration from people I didn't know, to getting inspiration from myself and from the people around me. More importantly though, the time away from social media allowed me to really hone in on what it meant for me to be healthy and successful. The more time I spent away from those outlets, the deeper the connection I started having with myself.
When I decided to return to social media, my boyfriend said, “Social media wasn't the problem, it was your self-control.” No truer words have been spoken. While the time off allowed me to relearn self-care and self-control, I could have done that without leaving social media completely by reducing the amount of time I spent scrolling, limiting what I posted, and creating boundaries with friends and family.
Today, I make taking my medications, doing my treatments, and managing my cystic fibrosis-related diabetes (CFRD) my number one priority no matter what. I nourish my body my way -- which sometimes means pizza and sometimes means fruits and vegetables. I exercise my way -- which sometimes means a short walk around the neighborhood with my dog, a slow and steady 10-minute stretch in my living room, or even a 30-minute weightlifting session in the gym.
Health and wellness is taking care of me, my way, the best way that I can, without allowing others to make me feel guilty for it.
Health and wellness is being patient enough to explain cystic fibrosis and its manifestations to my friends that insist on radical diet changes, over-the-top exercise programs, and unregulated nutritional supplements.
Life in general is not linear, it is ever-changing and ever-moving, and the best thing I can do for myself is not only understand that things happen, but to understand that things happen to everyone else, too.
It doesn't happen overnight -- the sense of peace that comes with totally being okay with your journey, the way it is, or the way you make it. Patience is key. Taking every single day for what it is, instead of what you want it to be, is the best attitude to have to start. Once you start figuring that part out, understanding the process of change becomes an easier second step. It took some time, but I finally realized that I will live up to my own version of health and success and that is all that matters. Success, to me, is loving the people around me to the best of my ability and doing that better than I did the day before. Health, to me, is my ability to be proactive in taking care of my body, my mind, and my soul, and to do that however I need to in order to survive while not impeding on the happiness and well-being of others.
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Adult with CF
Jessika is an adult living with cystic fibrosis and CF-related diabetes. She works from home as a full-time freelance ghostwriter specializing in self-care, relationships, health and wellness, personal finance, and organizational happiness. She is also a professional editor, copywriter, and webmaster. Jessika is a full-time student with a bachelor’s degree in accounting, working towards her master’s in organizational leadership. A full-blown beach bum living on a barrier island on the east coast of Florida, she loves a good book, a good movie, good music, good food, and a good cup of coffee. Jessika spends her free time traveling and at the beach with her boyfriend (thanks honey), in the sun, sand, and in the ocean. She is also a director with the USACFA and volunteers with the GFWC. You can contact Jessika via Instagram, Facebook, or email at firstname.lastname@example.org.
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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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