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.
When faced with her daughter's diagnosis, Linda Dolan used Emotional Freeing Techniques to help her deal with the uncertainty of cystic fibrosis.
December 17, 2020
Holidays in the Hospital
Despite COVID-19, I Participated in a CF Clinical Trial
Do you remember hearing for the first time that you or someone you love has cystic fibrosis?
My CF journey began in the spring of 2010 when my precious 28-year-old daughter, Jenny, was working on her MFA in creative writing at The University of Washington -- Seattle. That's 2051.9 miles away from our home in North Aurora, Ill.
We heard the words “I have cystic fibrosis” over speakerphone. After too many false diagnoses to count, she finally knew its name. This was the single scariest moment in my life. I felt like someone
punched me in the stomach and knocked me down. Her voice shaking, she tried to assure us that she was going to be OK. She warned us not to Google it. The gut-wrenching grief and pain were immediate and intense.
While she spent nights sitting on the couch in her living room trying to sleep between periods of coughing up blood, I lay awake, heart pounding, not knowing if she was going to live or die. I didn't understand it at the time, but I was stuck in a fear
I did my best to be there for her. I desperately wanted to say the right thing, but words failed me. The following week, I flew to Seattle to attend her first clinic visit. It was hard to soak in all the information My main question: how could Jenny have
CF when no one in our family has it?
While I was in Seattle, Jenny and I did our usual things. We played UNO, ate ice cream, drank herbal tea, watched romantic comedies in our pajamas, and ate a lot of chocolate. But nothing felt right or normal. Months later, Jenny asked me how I felt about
her diagnosis. I told her I was sad but hopeful. Jenny needed and wanted more from me, but I didn't have anything left to give. I have regrets. I was not fully present for honest conversations about her fears of a shortened life, the pain, infections,
treatments, and what her new reality was becoming.
I was totally unprepared to deal with my feelings when CF took a seat at our family table.
It's been 10 years since I heard those words, “I have CF.” I'm now retired and 68 years old. I'm a late bloomer in more ways that I can count. I desperately wanted and needed to learn how to handle my emotions, because what I was doing wasn't working.
Have you heard the saying, “When the student is ready, the teacher will appear?” My teacher, which took the form of Emotional Freedom Techniques (EFT, also known as tapping), appeared one afternoon in November 2018 and changed everything. I was searching
for the newest Brené Brown YouTube video when a video about EFT popped up. I had never heard of it, so of course I watched it.
EFT is a powerful mind/body technique that combines Eastern and Western therapies to help a person quickly release overwhelming emotions stress, fear, worry, bothersome memories, and even physical pain. There is a growing body of evidence that the therapy
works. Over 100 papers published in peer-reviewed medical and psychology journals have demonstrated its effectiveness for phobias, anxiety, post-traumatic stress disorder, and much more.
EFT is sometimes called “acupuncture without the needles” because it also uses your body's energy meridian points. You stimulate these meridian points by gently tapping on them with your fingertips -- literally tapping into your body's own energy and
My first impression was that it was a silly, New Age thing. I quickly got over that though because it was very calming and I experienced a profound feeling of relief while practicing.
I had a deep sense of home, and a “knowing” that I wanted to heal myself and share EFT with others. I was hooked -- and on a mission. I found an EFT practitioner near me and met with her immediately the next day. Eighteen months later, I become a Certified
EFT Practitioner with EFT International.
My fears of uncertainty were off the charts when Jenny was diagnosed. I felt like I lost myself somewhere along the way. Today, many people around the world are experiencing those same feelings of fear, anxiety, and stress on the rollercoaster ride called
No wonder we're struggling. Everything has changed. Home schooling, remote working /job loss, social distancing, stay-at-home orders, and deeply missing people you can't be with. Throw in racism and political unrest and you've got a perfect stress storm.
If any of that sounds familiar, consider trying an easy self-help, first-aid silent tapping tool called “Traffic Lights,” a 3-4-minute exercise that adults and children alike can use. It's a powerful combination of breathing and gentle tapping on acupressure
points to help you calm down so you can think clearly. You can use it anytime you are stressed, anxious, or when things are getting to you.
I encourage you to watch the Traffic Light video to experience it (and practice it) for yourself.
CF has given me more growth opportunities than I can count. There have been a lot of detours, twists, and turns on this journey. Has any of it been easy? No. But has it been worth the work? Yes. Through EFT, I was able to find peace and clarity. Lasting
change is not only possible, but with EFT it can be creative, fun, and joyful.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Mother of an adult with CF
Linda is mother to Jenny, who was diagnosed with cystic fibrosis at age 29. As a Certified EFT Practitioner, Linda enjoys helping people experience emotional freedom through tapping. Previously, Linda worked as a social worker, addiction counselor, and
senior center director. She and her husband Jim live in North Aurora, IL. They are blessed with three daughters and five grandchildren. You can reach her 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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