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.
The radio stations are filled with holiday music, but as 2015 comes to a close, I find myself listening to an entirely different playlist. In my mind, there are not only songs that make me reflect on the path that my family has so carefully traveled so far, but also the hope and the promise of all the good things yet to come.
December 23, 2015
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I don't have a musical bone in my body. And yet, music is very important to me. I could tell you the name of the song that my husband and I listened to on our first date, and I smile every time I hear the song we danced to on our wedding night. And that song that played on the radio while we drove to my son's first cystic fibrosis appointment -- yes, I remember that one too -- still haunts me.
To this day, all I need to hear is the first few notes, and suddenly I am transported back to that exact moment in time. It doesn't matter where I am or what I am doing, the flood gates open, and a tidal wave of emotions washes over me.
For this same reason, I find numbers equally fascinating. As a mother of a teen with CF, they are fundamental to how I perceive the world. For example, 31 was the life expectancy given to my son the day he was diagnosed, and 13 is the number of medications he takes every day, as well as the number of times he has been hospitalized. Because I am a mom, I force myself to look beyond these values.
Take my son's life expectancy. Because of the progress of modern medicine and the Cystic Fibrosis Foundation's commitment to a cure, the
median predicted survival age is now around 40, increasing an entire decade since Sean's diagnosis. It is important to remember that this number only pertains to CF adults born 40 years ago. We do not know the true impact that medications such as
Kalydeco® and Orkambi™ will have on the younger members of our community. Suddenly, numbers like 41 and 13 no longer have true empirical value to me. Instead, they serve as placeholders.
Our community is defying expectations as people with CF are living longer and healthier lives. This past year, we reached a significant milestone: Adults now make up over half of the CF population. Even more poignant to me is that, in a few short months, my son will join that statistic.
No longer a fair-haired, chubby-cheeked toddler, my son now shaves every day and is tall enough to look me straight in the eyes. In every sense, the CF Foundation has literally changed the face of this disease.
A senior in high school, Sean is applying to colleges all across the country and trying to figure out his career path and future. He has told us that he wants to be a doctor and help children like himself one day. In every sense, his words are music to my ears. Regardless of what he chooses to become, I am simply grateful that he has the opportunity to make these choices. Even better, I know there are many more exciting decisions to come: what graduate school to attend, where to get married, how to celebrate graduations and promotions, and even when he would like to retire.
Knowing myself, I will be watching from the sidelines and carefully listening to find new songs in which to associate these moments in his life. And I will credit each and every one to the miraculous gift of medical science. Without a doubt, the CF Foundation is the background music of my life.
Mother of a teen with CF
Katrina is a mother of three living in San Diego, Calif. Her oldest son Sean was diagnosed with cystic fibrosis just four days before his second birthday. Together with Sean, Katrina gives speeches at CF Foundation fundraisers, and local biotech firms and pharmaceutical companies about the importance of CF medical research and the impact it makes on families living with chronic diseases. She serves on the Board of Directors for the San Diego Chapter of the CF Foundation and co-chairs the Moonlight Beach Great Strides Walk. She and her husband Robert have committed themselves to keep walking until they find a cure for their son, as well as the 30,000 other sons and daughters living with this disease.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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