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.
After several months of telehealth visits with my care team, I returned to the clinic for an in-person visit. Because of COVID-19, some aspects of the visit were different than before.
September 14, 2020
Having a Newborn With CF During COVID-19
How Being a Black Woman Shaped My CF Journey
These days are beyond trying; they are tiring and rather tedious. If you feel like you are wondering "... where is the light at the end of this tunnel?" you are not alone. We all would like the answer to that question. I was able to witness a glimmer of
light when I went to see my cystic fibrosis care team a few weeks ago.
Who knew, during a pandemic, that seeing my CF doctor would provide me an overall sense of relief?
I last saw my CF doctor and team in early March, right before COVID-19 cases started to spread like wildfire. Back then, we talked about "extra" precautions to take, common sense things really, and to avoid being around anyone who is or may be sick. Living
with CF, I've been more prepared for handling this situation. For that, I am honestly grateful.
At my first visit since the shutdown, things were a bit different. Upon entering the clinic, there were markers on the floor in the entry between the sliding doors that read "six feet apart," indicating where patients needed to stand if others were ahead
of or behind them. A desk with masks and hand sanitizer was also in the entry. After entering, I was screened by a nurse. She took my temperature and asked me a series of COVID-19-related questions to determine if I could proceed into the clinic.
My clinic had added a barrier of plexiglass at each check-in window. All check-in procedures were handled as smoothly and safely as possible. I was alone in the waiting room -- there wasn't a single soul near me, a welcome sight. Shortly after I sat
down, the nurse called me, which was the shortest wait time I think I've ever experienced.
Once the nurse directed me back, the visit went like usual. My height and weight were measured (I've gained a few more pounds -- thank you, Trikafta®,
for this reserve!) and then I was placed in an exam room where my vitals were checked. My CF doc came in immediately. We discussed how I was feeling, how my breathing was since I started taking Trikafta, and any concerns I had. I also met with the
dietician to talk about all things CF-related diabetes. Next, I met with the social worker regarding any possible insurance questions. One of the respiratory
therapists came to get me for a pulmonary function test (PFT). I hadn't had one since March and I had never gone that long between doing them. Then, I went back to my room. The CF clinic pharmacist met with me to discuss all my meds and the pharmacies
I deal with. My CF doc returned to my room to go over my PFT result and he addressed some other issues and questions I had.
I was intensely curious if any new COVID-19 information was out there, especially for CF patients and their families. My doctor didn't have much in the way of a COVID-19 update, as information is constantly changing. He expressed how the CF Foundation
is keeping everyone as best informed as possible, which is immensely helpful. He shared his belief that things will get worse during the fall; therefore, he has been trying to see all of his adult CF patients in person, now, before getting to that
I felt his best advice was reiterating what I all already knew. Wear a mask. Avoid large gatherings and public places where many people may be. Stay at least six feet apart from others, if I must go out. Only visit places that are absolutely necessary.
Wash my hands. Be smart and remain careful. He also pointed out that COVID-19 cases in CF patients (per data given) had proven to be more optimistic than originally feared. This doesn't mean that COVID-19 isn't scary, or to not take it seriously.
It was a glimpse of good news I needed to hear. If you are feeling nervous about returning to your CF clinic for an appointment, I encourage you to try and remain calm.
Keep in mind, care teams are screening every single person who walks into clinic and are taking every precaution they can to ensure everyone's safety, even people who may be sick but have no symptoms. Express any concerns you may have -- ahead of time
-- with your care team to help ease any anxieties you may feel before your visit.
It was great to see my team. They are like my second family and I missed them. I was also thankful to have a PFT done in clinic. Most of all, just seeing my care team and being able to talk face-to-face again was refreshing. I feel the entire CF community
is so fortunate to have some of the most wonderful care team members caring for us. These days are tough on the care team members, as well. Believe it or not, they miss seeing us. If you do go in for a CF clinic soon, be sure to thank your care team
for all that they do.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Michelle has participated in CF Foundation events locally for years, served on committees, and fundraised. She is a member of Community Voice and a facilitator for Teen Connections. In addition, Michelle is a member of the CF Community Blog editorial
board, her CF clinic's patient and family advisory council, and CF advocate for Congressional Captains (Heart of America Chapter). A resident of Wichita, Kan., Michelle holds BA in human services/psychology. She enjoys writing, including a blog about her life since starting Trikafta®, cooking, riding my bike, gardening, music, singing, and spending time with her husband and their two bird dogs.
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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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