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.
The unexpected ups and downs of having a son with cystic fibrosis sometimes makes me feel like I'm on a game-show obstacle course, dodging punches and avoiding the mud pit. It helps to do my research, keep lists, rely on my support team, and take some “Mommy time” to get through life's daily challenges.
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Recently, our family was watching a game show in which participants have to try to complete obstacle courses with over-the-top, brightly colored, unexpected obstacles in their way. As spectators, it was thrilling to watch from the comfort of our home
and laugh together as the contestants courageously tried to scale a wall while trying to avoid the giant red boxing gloves that would inevitably send them to the mud pit that lay below. Relentless and with a determination to finish, the contestants
would crawl out of the mud pit and try again and again. Each time got progressively harder as every surface and crevice became caked in slippery mud. The first couple of times we as a family laughed and laughed, but soon we found ourselves cheering
on and encouraging the contestants -- hoping their resilience and perseverance would lead them to victory.
Stacy with her son and CF warrior, Evan.
As a parent to a child with cystic fibrosis, I often feel like a contestant on one of these game shows, thrown into an unfamiliar world with brightly colored obstacles, unknown surprises, and a constant fear of the inevitable gut punch that serves as
an unwanted reminder that no matter how hard I might try, my child still has a chronic illness. I find myself daily scaling the wall of CF life, strategically placing each step, and diligently going through the “ings” of each day, as I like to call
them -- feeding, therapy-ing, nebulizing, sterilizing, homeschooling, disinfecting, insurance-ing, scheduling, parenting. It's a well-versed routine, one that has been mastered through years of fine-tuning every step, maneuvering every hand hold needed
to scale the part of the wall of CF life I know, the parts that are familiar to me.
But inevitably, the landscape changes year to year. A hospital stay, a sinus surgery, a G-tube, a decrease in pulmonary function tests, elevated
liver enzymes, CF-related diabetes -- the list goes on. Unexpectedly sucker-punched, I find myself in the mud pit -- tired, exhausted, weighed down by mud, full of emotions,
and back at the beginning.
It's during these gut-punch moments that I take a little extra time to enjoy the unwelcome mud bath I find myself in, pull back from some of the other distractions in my life, and focus on getting back to the wall.
When faced with a new CF challenge, I immerse myself in the education surrounding it -- research articles, background work, and reaching out to other CF families and clinical staff -- learning all that I can so that I can be an equal part of the decision-making
process. I am my son's most important advocate, a job I do not take lightly. With knowledge comes power and an assurance that every decision and choice made for my son is the best one possible.
If you're like me, you work through a daily mental checklist. However, during these times of unexpected change, my already full mental list becomes increasingly hard to keep track of as my priorities are forced to change. So, I go old school and create
a physical to-do list day by day. I prioritize things based on importance and urgency and add to it as things come up during the day. Physically writing down and then crossing items off my to-do list helps to restore my sense of control and gives
me time to analyze further actions.
When the going gets tough, I gather my team for support. We come together as a family to divide and conquer. My husband and I devise a master plan to split the CF responsibilities that we shoulder equally, doing our best to support and lift each other
along the way. We have a one-on-one chat with my oldest son, explaining the shift in our daily routine to make sure he feels included in the process of taking care of his younger brother with CF. Together, as a family, we patiently work together to
adjust to our new normal.
It takes a village, especially when you're raising a child with a chronic illness. Although it doesn't come naturally, I have learned the best thing to do during these times of unrest is to turn to my support system and ask for help -- frequently referencing
my to-do list. By confiding in our friends and family, I find a safe outlet and the help and support I need. And vice versa, they get a window into the life of CF and play an important part in our CF journey.
Every day, not just during the hard days, I make sure to call a commercial break and carve out 30 minutes for myself -- “Mommy time” as it's referred to in my house -- no matter how old my kids get.
How easy it is to become overwhelmed by the responsibilities of raising a child with CF. But the best gift I can give my son is the gift of a healthy and confident mother.
Taking advantage of small moments to recharge is key to keeping my cup filled. I have yet to meet a more fearsome contestant in the game of life than that of a parent to a child with cystic fibrosis. Though our course may be filled with unexpected obstacles
and unseen challenges, I am confident our resilience and perseverance will pay off and, in the end, we will raise happy, thriving children -- the greatest victory of all!
Interested in sharing your story? The CF Community Blog wants to hear from you.
Mother of a child with CF
Stacy is above all else a mother to two beautiful boys, Jaxson, 10, and Evan, 7. Evan was diagnosed with cystic fibrosis at 5 weeks old. Motivated by the parents who have gone before her, Stacy is passionate to do her part to propel the mission of the
Cystic Fibrosis Foundation forward. Stacy is actively involved in her local CF community and serves as one of the Primary Children’s Cystic Fibrosis Clinic’s Quality Improvement Patient/Family Partners. She also serves on the Primary Children’s Cystic
Fibrosis Foundation Parent Advisory Council and is an active board member for the Utah/Idaho chapter of the Cystic Fibrosis Foundation. Nationally, Stacy serves as one of the tri-chairs for the Experience of Care Steering Committee as well as one
of the patient/family members for the Liver Disease Guidelines Committee. Stacy lives in Utah with her husband and two boys, supporting her sons in their sports, activities, and piano. Follow Stacy on Instagram and Evan’s journey on Instagram.
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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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