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.
Having been diagnosed with cystic fibrosis as a baby, I grew up thinking I had an early expiration date. Once I started taking Kalydeco®, my health completely changed for the better. For the first time, I had a solid future ahead of me, and I needed to prepare for it.
November 10, 2020
Why It Didn’t Matter That My Future Wife Had CF or a Lung Transplant
Not Letting CF Dictate My Life
“We have to die on the same day,” my sister used to always tell me. Of course, I wholeheartedly agreed but secretly always knew better. I knew my sister would have to live without me one day.
When I was born my parents were told my life expectancy would be 16 … “or so.” I was 10 days old when I was diagnosed with cystic fibrosis and from that day on I always had an “expiration date” as I like to call it. Growing up I was your typical kid:
played after-school sports, loved having play dates, built pillow and blanket forts with my siblings, etc. Starting at about age 10, though, I was hospitalized once a year (on average), and as I got older, the closer I got to my premature expiration
CF grew up with me. The treatments and medications became more advanced and comprehensive the older I got. Rules and regulations to keep us CF patients healthy continued to evolve, but they still didn't
prevent my disease from progressing. It wasn't long before I was hospitalized twice a year, had regular surgeries, and was missing class at least once a week.
For my whole life, I knew I was going to die earlier than everyone else around me, and as odd as it sounds, it never really troubled me. Those were the cards I was dealt, and I was just going through the motions until then.
I still wanted to be captain of the volleyball team. I still wanted to get good grades and get my driver's license. So I did -- I did all those things and never thought twice about my future. After all, my time was NOW.
In my early 20s. I was still alive and kicking. I was working my way through finishing college and was on the life-changing medication Kalydeco®. Scientists and doctors alike were praising it. Kalydeco was going in and correcting my CFTR protein on a cellular level.
This wasn't a cure, but in terms of treatment, it was a homerun with the bases loaded. Not only was I the first person in Colorado to be part of the research for this groundbreaking medication, I was feeling better too. I was no longer having
frequent tune-ups. I was not only in school but also working, whereas before I wasn't able to be in school full-time, let alone have a job. Life was coming at me faster than ever before, and it wasn't just yesterday, today, and tomorrow that was
on my radar. Cue my midlife “reverse existential crisis” entering the scene. And therapy. Lots of therapy.
What I mean is that now my life wasn't coming to an end soon; my world was actually opening itself up.
I had a solid chance at a future, CF and all. A life past “young” adult. I could have more than just a job -- I could have a career. And a family. And many, many more years to just do stuff. The whole way I thought about life had to change. I
needed to plan for things further away than my social calendar for the weekend. I needed to save money rather than spend it. I needed to invest in my future rather than live as if I wasn't going to have one. It's not easy to change the way you think
and the way you live your life every day, but it became clear to me that my life and world were changing, and I needed to get on board.
At times, I find myself resorting back to the easy way I used to live my life -- the easy way meaning I sometimes want to spend money rather than save it, resist the urge to work on myself and my career, and simply put it out of my mind that I am now
30 years young, not 30 years old.
I love that I have so much more life to live, but it also scares me senseless. Will I be successful? Should I get married or have kids? What happens when I get sick and can't live up to society's expectations? How do I maintain a high quality of life?
I don't have all the answers, but what I know is that there's only one way to find out. Get out there, take a deep breath, and live it up.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Sarah, a Denver native, is a graduate of the University of Colorado who found her passion for writing when she majored in English. Sarah was diagnosed with CF at 10 days old. Her favorite people in the world are her niece and nephew; she loves to travel
internationally; and her happy place is unequivocally the beach. Sarah has been involved with the CF Foundation for years, volunteering, writing proposals, and speaking publicly. Her CF Great Strides team, Sarah's Striders, was the first group to
get a CF bike ride in Colorado (Sarah's Riders). Her life motto: You gotta try everything at least twice. Find her 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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