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.
It might seem strange but for someone with cystic fibrosis, something as simple as a mammogram can spark joy. It means that I have lived long enough to have reach this preventive care milestone, and that is something to celebrate.
May 24, 2021
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Medical Milestones, and the Next Generation of the CF Community
Living with cystic fibrosis, I have experienced a lot of CF medical milestones. I have had a lot of “firsts” in my 40 years of living with CF -- first tune-up, first intestinal blockage, first antibiotic resistance, first sinus surgery, and fortunately, first modulator, among many more. But it isn't often that I have gotten to experience some of the normal medical milestones that my friends have reached.
Because I now have my COVID-19 vaccine, I can get back to some of my regularly scheduled medical appointments. One of the first on the to-do list was my yearly
Pap smear, which I had to cancel last year on March 15, 2020, just after COVID-19 was declared a pandemic. Although I have never had issues with my reproductive system, keeping these regular appointments is important for preventive health.
It can often feel like a lot of work to do these normal appointments on top of CF life, but they are a must. My CF bestie Carly died this year of cervical cancer, which developed years after having a double-lung transplant.
So quickly can our little cells turn abnormal. Never knowing what the future can hold for us, it's helpful to keep tabs on as much as we can. I'll add that the same goes for yearly skin cancer screenings and dental appointments -- they are a must
for preventive health as well.
Sitting in the room for my Pap smear, with my undies folded neatly under my other clothes -- as we ladies do -- I saw a prescription on the desk for a mammogram with my name on it. I was so excited and filled with joy that I had made it to 40 and get
to experience the “squish” and “squash” with the rest of my friends. My gynecologist was definitely amused at my excitement.
Although it may seem small, these normal medical milestones are something to celebrate. They are a mark of survivorship and another part of life to be relished in memory of all those CF friends we have lost.
I get the same feeling of gratitude every time I fill out a survey and my age bracket is further and further down the list, or when I have to do a deep scroll to get to my birthday in 1981. Or recently when I had to buy a new car -- my fourth car. I was
amazed I got to live to a fourth car!
As modulators allow many of us to live more normal medical lives, these normal medical milestones will probably not seem as exciting to those whom I like to call
the “Kalydeco Kids,” who started on modulators as children and who will experience a vastly different disease. I do hope that they will keep in perspective how fortunate they are and remember their elders who came and were lost before them -- those
elders whose parents and families spent decades fundraising and advocating to make their tomorrows better.
Although I will allow these Kalydeco Kids the luxury to take it for granted, I hope they remember that many of their CF elders never reached the milestones they will reach and that there are fellow people with CF who are in the 10% -- who aren't eligible
for modulators -- who still need medical innovation on their behalf. I hope these Kalydeco Kids will keep up the fight #untilitsdone for all people with CF.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Katie, who lives in Alexandria, Va., is a teacher, traveler, and turophile. She is also the CF Advocacy Captain for Virginia’s District 8, a facilitator for the Teen Connections program, and has worked on several BreatheCon and FamilyCon committees. You can connect with her @KatieF on Instagram and Twitter.
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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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