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.
You may be surprised to learn that this year, my husband and I celebrated the two-year anniversary of our son's CF diagnosis. How is it possible to celebrate a day that brings me so much pain to remember, you might ask? Because it's a milestone.
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I will never forget the day my son Levi was
diagnosed with cystic fibrosis. After spending two weeks sick with fear after his
newborn screening came back with elevated immunoreactive trypsinogent (IRT) levels, the direction that my life would take came down to a phone call.
We had stopped off at the store to get Band-Aids® for Levi's tiny, 3-week-old arms, which had blistered after his sweat test that morning. We had just walked in the door when the phone rang.
“Is this Levi's mom?” the doctor asked as I punched in the code to our alarm.
“Yes,” I said and held my breath.
“I'm calling to let you know that we got the results from Levi's sweat test and it came back … ”
“Negative,” I willed her to say. “The test came back negative.” I would hang up the phone, cry tears of relief and move on with being a new mom. This had to be a blip in our lives; something we would always look back on and thank God that it hadn't happened to us. This couldn't really happen to us.
But as you already know, she didn't tell me the test was negative.
What happened next was a five-hour blur that included heading back to Vanderbilt Children's Hospital to learn about cystic fibrosis and how our lives would change from there on out.
We brought Levi home along with a manual about CF and a small “thumper,” with orders to begin
chest physical therapy (CPT) and to come back next week.
That was March 11, 2014, and one of the worst days of my life.
You may be surprised to learn that this year, my husband, Ron, and I celebrated the two-year anniversary of Levi's diagnosis. How is it possible to celebrate a day that brings me so much pain to remember, you might ask? Because it's a milestone.
On March 11, 2016, we celebrated two years of being “admission-free;” two years of not coming close to a hospital stay; two years of having a kid who's -- honestly -- been healthier than your average toddler. Since the day of his diagnosis, I can count the number of colds he has had on one hand. He is a happy, healthy, very active little boy who loves music, the park and Peppa Pig, and we are stronger, wiser parents than we were the day of that phone call.
Having a child with cystic fibrosis has forced me to be an optimist -- something that's not natural for my hypochondriac, obsessive self, but something that's been vital for our family's happiness.
And so we choose to celebrate the milestones, not only in our lives, but also in the CF community.
When Orkambi® was approved by the Food and Drug Administration (FDA), we bought a bottle of champagne.
When we received positive news after a particularly stressful CF clinic, we took Levi to lunch and went shopping for a new toy.
When we raised more than $8,000 for our
Great Strides team last year, I had the word “breathe” tattooed on my wrist.
When Levi received his airway clearance vest a few months ago, we posted pictures and videos like the proud parents that we are and celebrated with ice cream.
When we hit the two-year anniversary of Levi's diagnosis, we cried, we hugged and we allowed ourselves to be proud of the fight we have fought for the last 24 months.
I definitely have my moments and my setbacks. CF is scary and overwhelming, but it doesn't do me any good to dwell on the things I can't control. Instead, I choose to be positive and look forward to the future rather than fear it. I choose to be happy.
We still have a lot of milestones to achieve for the CF community, and when we do, I'll be on hand with the champagne and ice cream.
Mother of two children with CF
Originally from Nebraska, Erin lives in Nashville, Tenn., where she enjoys staying active and busy with her son Levi, daughter Carolina, and husband Ron. Erin works full-time in corporate communications in addition to writing on a freelance basis. She is passionate about CF advocacy and awareness, participating in year-round fundraising for the CF Foundation, and is a member of Community Voice. In their free time, Erin and her family love traveling, sporting events, and spending time outdoors, all while fitting in her children's daily CF treatments.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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