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.
Sending your child to kindergarten for the first time is hard enough, but when your child has cystic fibrosis, it is even harder. Here's how I handled my daughter's transition to kindergarten and the lessons I learned along the way.
Julie Lazzara, M.C.
August 31, 2017
What’s Next for the CF Community and Health Care Reform
How to Immerse Yourself in the CF Community
Many parents cry when they send their kids off to kindergarten for the first time. But, parents of kids with cystic fibrosis have a bit more to worry about. When my daughter with CF started kindergarten this year, we were both very excited. However,
I knew that we had to take a few more steps to prepare for the school year than the average parent.
The week before school started, I emailed my daughter's teacher with some information about CF and asked her if she had any questions
about it. My daughter and I then went to visit with the school nurse so they could become acquainted with each other. We dropped off her medications that the nurse
would be keeping in her office, along with the required forms filled out by her doctors. I made sure that the necessary people had a copy of her 504 plan that we developed for her year at pre-K. We also filled out a chronic illness form to protect her from being penalized for potentially missing too much school. I recommend checking with your
child's school ahead of time on what forms are required or recommended, as each school district may have different policies.
Because caring for a child with CF means that we spend more time in the morning and before bedtime getting ready, we made sure that we accounted for this in setting
the time we wake up and go to bed. My daughter knows that skipping her treatments is not an option, so if we get a late start, then we will be late for school.
Luckily, she loves school and this is a good motivator for her. To save time in the morning, we have her morning pills ready for the week in a pill box. My husband and I split up the responsibilities of getting her ready for her treatment so she can
feel that we are all a part in helping to keep her healthy.
Find the routine that works best for your family and stick with it for consistency.
One of the most visible and consistent parts of managing CF at school is taking enzymes before eating. Most schools do not allow students to carry medication on them for self-administration, so students may be required to go to the nurse's office to take them or have them administered by the teacher. This
may also vary from year to year. It is important to develop a good working relationship between the school nurse, your child's teacher, and anyone else that might be involved in your child's CF care at school. Find out who will be reminding your child
to take their medication, and keep in mind that it can be easy for him or her to get distracted during the day or feel embarrassed to ask when it comes time to take medication.
In addition to the more practical aspects of preparing for school with CF, I also wanted to make sure that my daughter was prepared in the event that she had to answer questions about her condition. We had talked about her CF before, but at this age,
I was able to explain it to her in a bit more detail. I showed her an animated video, and we had a discussion afterwards. I told her that it was up to her how much
she wanted to share about her CF with her friends and classmates. I reminded her that CF is nothing to be embarrassed about it, but it also does not need to be what defines her. After all, many people need to do different things to keep themselves
healthy. Talk to your child about any concerns that they have about managing their CF while at school ahead of time so that they feel confident in their own care.
When the day finally came to send my daughter to kindergarten, I couldn't believe it was actually here. I remember thinking when she was first diagnosed as
a baby that I would keep her in a bubble all her life to keep her away from germs. Over time, however, I realized that we were both stronger than that.
I am so proud of the person she has become, and I am lucky to be her mother.
Neither of us cried that morning when I dropped her off at school. Instead, we exchanged smiles and reveled in how far we had come.
Julie Lazzara, M.C.
Mother of a child with CF
Julie works full time as a professor of psychology at a local community college in Phoenix. She received both her undergraduate and graduate degree from Arizona State University. She is married and a mom of two young children. She has an amazing daughter, who just happens to have cystic fibrosis, and an awesome son, who just happens to have epilepsy. She and her family are passionate about living life to the fullest while at the same time advocating for a cure. You can follow her on Twitter @explorepsych.
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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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