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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
With Five Feet Apart hitting theaters in March, we've been getting some questions about infection prevention control (IPC) and what the film might mean for the CF community. Here's what our CF center and hospital have been doing to support the IPC guidelines and encourage questions among our patients and families.
Betsy Bryson MSN, PPCNP-BC
February 25, 2019
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As someone who has been a cystic fibrosis nurse practitioner for many years, I've witnessed a lot of changes when it comes to our understanding of the disease and how we treat it. Perhaps one of the most noticeable examples of this is infection prevention and control (IPC), which has come a long way since the CF camps of the '90s. It is no surprise, then, that the recent Five Feet Apart movie trailer has been raising some questions about IPC and IPC hospital policy among the CF community.
But first, let's start with the basics. Germs are everywhere. They can spread by shaking hands, hugging, or kissing, and by touching something that already has germs on it like doorknobs, computers, cups, or pens. When people sneeze or cough, they can also spread germs -- as far as 6 feet, in fact -- which land on surfaces and can sometimes stay in the air for hours for other people to breathe in.
For people with CF, being close to others with the disease puts them at greater risk of getting and spreading dangerous germs and bacteria. This is known as “cross-infection." Depending on the situation, cross-infection can lead to worsening symptoms, lung function decline, and even death.
Because of new knowledge and information about CF pathogens (i.e., bacteria, viruses, or other disease-causing agents), a multidisciplinary team of CF experts -- including a person with CF and the parent of a child with CF -- met in 2013 to update the Guidelines for Infection Prevention and Control. The recommendations that came out of this included:
As CF care team members, we felt it was very important to empower and educate our patients and families about these updated guidelines and the implications they would have for them both in and out of the hospital. To ensure we were hearing their voices, we included a patient and several parents on our committee to figure out how to best implement these changes. They were the ones who reminded us about putting masks at many different entry points to the hospital, helped us communicate the changes via a special edition newsletter, and guided the education process.
We also provided a special “pass” that people with CF could show to anyone in the health care system outlining the need for contact precautions (i.e., the use of gowns and gloves), explaining why they should be placed in a room when possible to keep a safe 6-foot distance from others with CF, and highlighting the importance of environmental cleaning.
The upcoming Five Feet Apart movie, which is about the lives of two teenagers with CF, touches on how people with CF are affected by the many rules and requirements that go into IPC -- especially in the health care setting. Oftentimes, people are not always aware of all the changes that CF centers and their hospitals made to implement these guidelines and to continue to make sure they are followed today.
Although the IPC guidelines can add to feelings of isolation and make it more difficult for people with CF to connect, I am happy to say that many CF centers have developed strategies such as online social networking, support groups via Skype or FaceTime, and CF blogs. In addition, CF Foundation programs like CF Peer Connect and virtual events provide space for people with CF and their family members to build relationships in real time with those who understand their experiences best.
At our center, we recently had a family ask about taking their preteen daughter to see Five Feet Apart, as they were concerned about the possibility of multiple people with CF being in the same movie theater and whether it would be appropriate for her age group. To help address these fears, we suggested that parents and family members could go and see the movie first and then rent it at home with their children or teens with CF a later time. We are also thinking about having a live Facebook event at the end of the month to encourage people to ask questions and clarify any confusion.
As we know with TV shows and movies, some of the story may not be depicted in the same way as what you may experience at your CF center. There can be several ways to accomplish the same recommendations or guidelines.
That's why I want to empower you as a patient, family member, or friend to ask your CF team about what you have seen or read if it was different than what you have experienced.
After all, this is the perfect opportunity for you to ask your care team the “difficult questions,” start a conversation, and ensure that you are receiving the best possible care for you.
Join the conversation on Facebook.
Betsy Bryson MSN, PPCNP-BC
Betsy is a pediatric nurse practitioner at Akron Children’s Hospital and has been caring for infants, children, and teens with CF for over 38 years. She has been involved with CF in many capabilities, including the CF Foundation guidelines for infection prevention and control in 2003 and 2013, CF R.IS.E. education program, coaching of CF teams through quality improvement initiatives, Partnerships for Sustaining Daily Care advisory committee, and caring for people with CF and their families on daily basis at her CF center. She lives in Akron, Ohio, with her husband, Rick, and enjoys family time with her two sons, Alec and Ryan.
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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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