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.
My girlfriend, Kassandra, is an adventurer who also happens to have CF. At the beginning of our relationship, I got to know how she lives with CF, and that's helped us plan out trips, as well as look toward the future.
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I'm lucky to be with an amazing woman, who just so happens to have cystic fibrosis. In the time that I have come to know Kassandra she has shown me her tenacity, commitment, talent, and willingness to succeed. There is a passion in everything that she does. She works hard to get where she wants to go or do what she wants to do.
When Kassandra and I first met at a nightclub in Knoxville, we had an undeniable and instant attraction to each other when we met on the dance floor. I'm kind of smiling as I'm typing this because of how clichéd that may sound, but it really was memorable.
We eventually went outside to talk and she told me that she had CF. I did have previous experiences dealing with and learning about CF because a good friend of mine has it, too. When I had it in my head that this girl was absolutely amazing, I just knew that I wanted to be with her. So, I watched and listened for a long time and learned the different procedures and routines: the enzymes, vest, treatments, and hospital visits.
It never bothered me before and I thought I understood what having CF meant. But, it really is important to learn more. I believe that understanding cystic fibrosis on a basic level is required for a healthy relationship. For instance, if you really care about your partner, it is important to not accidentally make them sick -- anything to help them avoid hospital visits. Basic hygiene and vaccinations are necessities we can all live with, but I've definitely become more aware of them because of how important they are to Kassandra's health.
Since we have been together, Kassandra and I have spent a lot of time outdoors. We love paddleboarding, hiking, whitewater rafting, kayaking, and exploring anywhere outside. And when we're not outdoors, we love watching documentaries on climbing and mountaineering. We've been on all sorts of adventures, and every time I've seen that she is capable of more, and wanting more.
She has the aura and heart of a pro athlete. But, we consistently need to be mindful and prepared for any challenges that we face, as they play a huge role in keeping everything we do running smoothly. We have had to make some adjustments to accommodate Kassandra's health. For example, I installed an inverter in my car, so we could plug in her equipment. Kassandra and I have become exceptionally well-prepared with backup supplies and strategies to deal with the diverse environments we find ourselves in. These adjustments are worth it so we can both enjoy the time we spend outdoors together.
Sometimes we need to come up with creative plans, but we always work together and communicate our ideas. I don't believe we would have come half as far otherwise.
We are working on her future, too. After talking about it for some time, I now know she needs to have a lung transplant -- and I've decided to move to Boston to be with Kassandra as she waits for her transplant. The gravity of this resonates within me, but it does not change the love I have for this woman. It has made me even more hopeful for a cure. We talk about the adventures we still want to share together and I believe we will do them.
She will conquer this disease!
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Partner of a person with CF
Kevin lives in Knoxville, Tenn., where he works as a swimming pool technician for local high-profile clients. His best furry friend is Lily, his 4-year-old border collie, who is always ready for an adventure. Kevin has several hobbies and interests including whitewater kayaking, mountain biking, hiking, nature conservation, and restoring his antique auto. Kevin was born in Middlesboro, Ky. and was raised exploring the rural wilderness of the Powell River in Tennessee.
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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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