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 a military spouse who makes frequent moves, I have had to transition to new cystic fibrosis care centers 11 times in 21 years. Here are three things I have learned to make each changeover work.
June 18, 2020
CFRD is the Cloud in My Trikafta Silver Lining
My Experience With Telehealth
Transitioning to a new cystic fibrosis center can be difficult. For me, this challenge has happened 11 times in the last 21 years. The ability to build a strong, longstanding connection with a CF team is not a luxury I possess. I have had to learn ways to advocate for care that is tailored to me, when the team I am relying on is not familiar with my long history. I have made the transitions less disruptive by building three main skills: confidence through knowledge, a starting position of trust, and the ability to narrow my focus.
My confidence comes from knowing my own history and knowing it well. I actually started working on this skill at about 8 years of age. Early on, I could recite my medications to the doctors at visits and articulate the changes in my symptoms (cough, sputum, etc.). Of course, my mother was there in the early days to back up my statements, but I was encouraged to be the one in control.
Even now, I do not sit idly by while a person from the medical team regurgitates what is printed in my chart. I actively listen and correct or agree to what is being said even if I am not being directly asked. I also have no problem asking questions that further advance my knowledge such as, “What is that used for?” or “Is this new symptom normal in this situation?”
Having a strong understanding of my care, history, baselines, and changes in symptoms has helped me explain my CF progression to new doctors down the line and aids me in understanding what is happening in my body.
But all the information in the world is useless if it can't be used effectively. I recognize the physicians and I possess very distinct expertise and the best care plan will utilize both perspectives. I may be the expert of my body, having lived with this disease for all my life, but the doctors are the experts in their fields, having gone through years of training to understand the science of it all.
In order for the doctor to trust my life-based experience and personal expertise, I need to trust their extensive education and clinical expertise. So, when a new treatment or plan is suggested by my new center, we can discuss it and come up with a plan for me to try. It may be very different from my current routine, but to work as a team, I will give it an honest try and trust their input. On the flip side, when I discuss situations unique to me, the physician will then trust my knowledge and use that background information as a starting point for their next line of thinking. We both are working toward the same goal of keeping me as healthy as possible, so a little trial and error is healthy.
Then there is the final piece that ties it all together -- taking a hard look at yourself and discovering what are truly your most important goals. I've learned how to stay focused on these priorities to not be overwhelmed by the onslaught of minute details. With health, mistakes will be made; there will be highs and lows, and adjustments will be needed over time. It's when I take a step back and refocus on only what is important that I find I am able to navigate all the uncertainty with less overall disruption to my life. For me, I focus on maintaining my health and not having CF dictate every aspect. So, I may have a drop in my pulmonary function test (PFT), or a lab result not turn out the way I expected, but by focusing on the overall trend I have a broader and more accurate understanding of where my health truly stands. When there is a change in baseline measurements, I do what I can to improve them, and if there is no change, I then look for ways to maintain the new norm.
I see setbacks and exacerbations as learning events, not as failures or a reason to stress. It's the overall goal I am focused on: living a full life as long as I can.
I know there will be some who disagree with my assessment. I am not trying to tell anyone that I have all the answers, because I don't. Even at 41 years old, I am still learning new things and adjusting to new standards. I do believe how you approach the transition to a new center is important. Be confident with your health assessment, trust in others' expertise, and most importantly stay laser-focused on what's most important to you.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Jacqui was diagnosed with cystic fibrosis at birth. She has participated in numerous clinical trials to further advance CF care. Jacqui is serving as a patient advocate on the CF Women’s Health Research Working Group and as a clinical research community
reviewer. You can find Jacqui in her kitchen, cooking for her husband and two boys or walking along the beach and trails near her home in southern California. She can be reached at email@example.com.
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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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