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.
Trikafta® restored my energy and eliminated my cough, but a spike in liver enzymes forced me to take a month-long break from the medication. I'm grateful that I'm back on it and also thankful for what that break taught me.
Mandy B. Anderson
December 30, 2020
Dancing the Frenetic Routine of a Mom to a Child with CF
Top 10 Blog Posts of 2020
Taking Trikafta is kind of like deciding upon the blue pill or the red pill in the movie, “The Matrix.” Remember that movie? Once you take Trikafta and know what it holds for you, there's
no going back. It can be a bit of a jarring experience if you have to go off of it because of side effects. Here's what happened to me, and what I've learned.
First, I have to be honest with you. I never thought I would want to take Trikafta. My health has always been fairly stable and the financial cost of it seemed too overwhelming for me, so I figured I would just opt out. Then I heard that it could help
with inflammatory markers and that piqued my interest. It turns out aging with cystic fibrosis can be a bit painful, especially when training to run a half-marathon.
Body aches and ribs going out from coughing were a constant for me in 2019. So, I went for it.
The first 110 days of being on Trikafta were marvelous. I had so much energy! Instead of needing eight or nine hours of sleep or spending sleepless nights tossing and turning because of coughing or body aches, I woke up before my alarm clock most days
at 5 a.m. feeling wide awake and well rested after only six hours of sleep. I never coughed, even after a treatment, and I could actually enjoy my morning and saunter around with coffee for a few hours before even having to do a treatment. I used
to sing for events or in church, but I had stopped because I became too anxious about not knowing if I would cough or not. Five days after being on Trikafta, I could sing again
like I used to -- clear voice and no coughing. It was wonderful.
And then it wasn't.
At the end of May 2020, my liver enzymes spiked to 2.8 bilirubin (prior to taking Trikafta in January, my liver enzymes were at 1.1 bilirubin). My doctors told me to stop taking Trikafta for a month so my body could readjust, and we could baby-step it
back to the full dose. I was heartbroken. It felt like hope had been dangled in front of me and then taken away with the snap of a finger.
I've spent the last decade of my life keeping my health on track with healthy daily habits, but the lack of Trikafta was a shock to my system.
The coughing started up again within five days of stopping Trikafta. I spent most of that month resting and napping when I wasn't working because my body was so worn out from trying to go back to my old normal. If you've ever been on antidepressants and
experienced the regulation period, where your body takes four to six weeks to get used to the medication, then you can understand what this was like. Instead of getting used to medication, my body was trying to figure out how to function without the
medicine that had provided such a dramatic energy boost. It was trippy. And such a letdown.
In July, I was able to start on Trikafta again, and as I write this, I am on my second round of 106 days of this medication. It's going much better, so far.
However, it was during that month of life without Trikafta, that I realized something pretty important. I leave you today with this truth: There's never a guarantee that any medication is going to work.
I've got to be diligent with my health, and this goes beyond just doing the basics of CF management. Maintaining a weekly rest day so I can keep doing all the things I love to do as a leadership coach, speaker, author, and entrepreneur is a must. Eating real food,
drinking enough water, exercising at least three times a week, and doing what I can to keep my mind and my body strong is a must. I can't get lazy with these habits just because
of a life-changing medication like Trikafta. They are just as important as everything else I do to keep myself healthy and strong on this hope-filled journey of life with cystic fibrosis.
If you need some more encouragement on maintaining your care routine, I invite you to listen to this podcast episode, “The Ups and Downs of Life on Trikafta.” May it inspire
you and give you hope on your own health journey today.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Mandy B. Anderson
Adult with CF
Mandy is a speaker, author, leadership coach and the co-founder of RAYMA Team. She helps leaders and entrepreneurs be healthy, stay creative, and have a dangerous hope through coaching, online courses, and the weekly, “She Who Overcomes Podcast” (available
on Apple Podcast and iHeart). Mandy lives in Mandan, N.D., with her husband, Nate. Learn more about her upcoming book, “Dangerous Hope,” and connect with her through her website.
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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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