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.
We've only lived with our daughter Louisa's CF diagnosis for six months. Besides adjusting to her treatments and care needs, our priority has also been to talk openly about this new normal with Louisa's older brother -- in ways a 3-year-old can understand.
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“What happened to Wisa?” “Why is Wisa at the doctor?” “Am I sick too?”
How do you explain your daughter's cystic fibrosis to her 3-year-old brother when you're trying to process it yourself?
In July 2020, 18 months into our parenthood journey with two kids, our rhythm and routine were thrown for a loop, or more precisely, brought to a screeching halt when our youngest child, Louisa, was given her cystic fibrosis diagnosis -- a diagnosis we seemed to have dodged twice before.
Louisa on the day she was diagnosed with cystic fibrosis.
Our first brush with a CF diagnosis was during my pregnancy with Louisa. A routine ultrasound found an issue in her bowel, which led to genetic testing and the realization of my own CF carrier status. My husband tested negative for being a carrier, and we were told his negative status could rule out CF for our baby. Louisa was born in good health, with no concerns related to the ultrasound findings; but her newborn screening was flagged
for further testing. At 1 month old, she had her first sweat test, which returned a normal result, so we pushed CF from our minds for the second time.
After months of various health concerns we revisited the pulmonologist in July of 2020. Her sweat test values soared and genetic testing confirmed a second rare mutation; there was no question about a diagnosis this time.
Along with shock and devastation, Louisa's diagnosis also came with a Pseudomonas culture. Just two days later, we were suddenly thrown into CF care, doing treatments
under sick protocol like chest physical therapy four times per day, nebulizing Albuterol®, Pulmozyme®, and Tobramycin, along with oral antibiotics and enzymes.
Louisa's initial care regimen suddenly took up three hours of our day; how were we to manage her care, our full-time jobs, and the needs of our son?
While Louisa's health was our top priority, so were the feelings and needs of our sensitive 3-year-old son, Theo. Theo is observant and inquisitive, so explaining our new normal to him in an age-appropriate manner was daunting.
“Louisa's lungs are different than ours, so they need some extra help to stay healthy.”
“Enzymes help her belly feel better when she eats and will help her grow big and strong like you.” “Visiting the doctor is an important part of keeping her healthy.”
These are some of the things we told him, hoping his young mind could process the new needs of his sister.
Theo and Louisa coloring together during treatment time.
Within days of the diagnosis we were gifted a book, “Our Baby Has 65 Roses,” written by a mother in Ireland. It tells the story of a baby sister born with CF through the eyes of her big brother. While I've never managed to read it without crying, it's
been a remarkable tool and has helped Theo make correlations between the story and our life at home. He's even noted that the baby in the book doesn't have a vest,
so she bounces on a ball to exercise her lungs!
After a couple months and the establishment of a healthy treatment protocol, the initial heaviness of her diagnosis began to ease, and life seemed to normalize. Louisa's health turned around in a rapid way and Theo has become a great little helper. He
loves to help plug in her vest tubing and turn the machine on. He playfully pretends to throw her enzymes across the room making her laugh and take them with ease.
It isn't always easy though. If you've ever had a 3-year-old, you know it's a tough age and emotions are big. When the emotions and behavior feel out of control for Theo we've found success in separating the kids during treatment time a few days a week.
By alternating mom/dad time with both kids, that one-on-one time really helps them each feel seen and heard, and it keeps those big feelings at bay when Louisa's extra needs can upset Theo.
While no expertise can be claimed in six short months of being a CF caregiver life; one-on-one time, answering questions in an honest, but
age-appropriate manner, and talking about CF openly has worked for us thus far.
I don't doubt the many challenging questions and conversations we'll face with both kids in the years ahead, but we're taking it one day at a time for now.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Mother of a child with CF
A native of Buffalo, NY, Jamie met her husband Andrew in architecture school in Detroit, MI. They currently reside in metro Detroit and both practice architecture full time. Together they have two children, Theo and Louisa. Louisa was diagnosed with cystic
fibrosis 2020 at 18 months old after two previous screenings told us otherwise. Jamie loves to travel, drink coffee, read, and try new restaurants. Follow Jamie 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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