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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
I dreaded transitioning from my pediatric care center to my adult care center. I was stubborn and knew that I did not want to go. I thought I knew best, that is, until one phone call changed my entire perspective.
December 4, 2018
Realizing My State Representatives Are Human
Teaching My Kids Hard Truths About CF
When you have cystic fibrosis, the one thing you can be certain of is change -- changes in lung function, symptoms, medications, care routines, and more. Having lived with this disease for 31 years now, I've gotten pretty good at learning to roll with
these changes. But, looking back, one change stands out as being one of the most difficult for me: the transition from pediatric to adult care.
During my childhood, my mom was my primary caregiver and medical advocate. My mom, my older sister with CF, and I did everything together. Clinic visits became
mother-daughter girls' days. My sister and I were hospitalized together every year, and my mom would stay in the hospital with us as often as possible. I was never alone.
When my sister transitioned to the adult clinic, things changed. It was strange to suddenly be doing all those things without her. I realized there would be a time that I, too, would move on to an adult center, and I began fearing that transition. I had
known my pediatric team for as long as I could remember. I was familiar with my hospital and the way they ran things. I didn't want that to change.
When the time came for me to move on, I felt like a baby bird being booted out of the nest. I remember crying as I entered the adult center for the first time. Right away I didn't really
like my new doctor. There were no familiar faces on the team. I was asked to discuss my medical history and detail my current treatment plan, which was incredibly
difficult for me since my mom had always done that part. To top it all off, I got lost when I left clinic and had to ask for directions to the parking garage; the entire experience was awful.
I decided right then and there: I wouldn't feel so scared and overwhelmed if I didn't come back to clinic. I was an adult now, so I could make that decision, right? Over the next couple years, I only attended occasionally. I'd make up excuses about why
I had to cancel my appointment, we'd reschedule, and I'd cancel again. This went on for quite some time, but it was not a sustainable pattern.
When I was 22 years old, shortly after having my daughter, I had a major health scare. As a result, I experienced my first adult hospital admission.
More than the physical pain I was in, what I remember most about that stay is how terrified I was. I didn't know anyone, I was unfamiliar with this new place, and I felt so very alone. The struggle I was going through, both physically and emotionally,
was unlike anything I had ever known.
A few days into my stay, my phone rang. When I picked it up, I heard a somewhat familiar voice. It was my doctor. The same doctor I had seen at that first clinic visit -- the one I vowed I would never like.
She was calling from out of town to check on me because she knew I must be having a difficult time. She didn't simply call and talk to the nurses or the attending physician on my case, she wanted to speak with me directly.
That was the first time I considered the possibility that perhaps I had passed judgement too quickly. Maybe I hadn't even given this new place a chance. Had I simply decided I wouldn't like my new CF team before ever meeting them? I began noticing little
things: the gentle way in which my team spoke to me about the importance of compliance, someone bringing me French fries because I had mentioned I was craving them, everyone making sure I was as comfortable as possible.
It didn't take long before I realized how much this new team genuinely cared about me. I even began to feel like they understood me on a deeper level than my pediatric team had, and they encouraged me to take a more active role in my care. I had been
so fearful about changing centers that I hadn't taken a moment to think that this change might be a good one!
I am happy to report that now, almost a decade later, I am being cared for at the same center and many of those original team members are still there. These days, I am compliant and I never miss clinic visits! Not only do I like my CF team, I love them.
They have become my CF family.
Looking back, I wish I had felt more prepared for the transition to adult care. If someone from my pediatric center could have “held my hand,” so to speak, during that first adult appointment, or if I had been introduced to the adult team while I was
still under pediatric care, the transition might have been easier. I also wish I had trusted myself more and taken a more active role in my care before reaching adulthood, so I would have known how to better advocate for myself. But, most of all,
I wish I hadn't been so stubborn and would have given my new adult team a real chance. It would have been so much easier to make that change together rather than me fighting it, and them, the whole way.
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Adult with CF
Jenny lives in Utah with her daughter, fiancé, two dogs, and a hedgehog. Since both of her older sisters also had CF, Jenny was immediately tested and diagnosed at birth. Jenny is passionate about raising funds and awareness for cystic fibrosis. She has been chosen as a recipient of the Vertex All in For CF Scholarship twice as she has pursued her degree in psychology. Jenny writes about motherhood, living with cystic fibrosis, and more on her blog Lungs N’ Roses and she can be found on Instagram @jenny_livingston.
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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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