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.
Looking for the right partner when you are sick comes with so many challenges. Despite CF's obstacles, being patient and honest can help you find a healthy and loving relationship that is right for both of you.
October 11, 2018
Anxiety: How It Affects More Than the Person With CF
The Importance of Being Honest With Your CF Care Team
Finding true love when you have CF can seem almost impossible. We CFers know all that we have to go through in order to survive. A lot of times we may tell ourselves that we don't deserve a great partner because of our illness. At times CF can be too
much for us, so we figure it will be too much for someone else.
In reality though, being in a relationship means helping each other work through the tough times. A relationship is supposed to provide balance, support, and care to whomever needs it at that time. I was afraid of putting that burden onto someone else.
It took me time to realize, but being upfront about your CF and finding the right partner will make you happier in the long run.
When I first started dating, I hid everything about my CF. I had an excuse for everything. If I coughed a lot, I would say, “I have a bit of a cold,” or, “The weather is affecting my allergies.” Before going on a date, I would take my enzymes so they wouldn't ever be in sight.
The more I could hide my sickness, the more they might like me, was my thought at the time.
As life kept going, so did the progression of my CF. I was getting hospitalized more often, taking more medicines, and getting put on oxygen periodically. At this point
in my life, I could no longer hide that I was sick. So, I made up my mind that I was going to tell the person I had been going on dates with about my disease. When I eventually told him, he felt that by hiding my CF I was lying about who I was. When
he tried to learn about CF and all my treatments, he came to the conclusion that my disease was too much for him to handle. After we broke it off, I promised myself
to always tell the person I am pursuing about my CF.
When I did find a partner who could handle my CF, I ended up settling for an unhealthy
relationship. I would think, “But he is okay with my CF, so I should stay with him because I won't find anyone else.”
It's easy to settle for someone because we feel crunched for time. We are told all the time we are dying young. Because of this, I feel that I overlooked all the warning signs of a toxic partner. We rushed everything about our relationship. I had a partner,
but I felt more alone than I have ever felt in my life.
I tried to change who I was because I thought he was doing me a favor by dating me. When we rushed our relationship, I did not know exactly who I was getting into a relationship with, let alone living with. It turned out to be a very traumatic relationship;
but it all could have been prevented if we took our time to get to know each other and try to find out if we were really compatible. You only come to know someone well with time.
Be patient and cautious with who you trust and give your heart to. Especially, as you get sicker. Being patient paid off for me when I met my astounding boyfriend. We talked on and off for over a year. Yes, that's a long time to just talk and get to know
one another. Since we did talk for so long, transitioning to a more serious relationship was much easier. He knew ALL about my CF, how to help me, and what I really needed in a partner (and if he could be that person for me). He had become my No.
He reminds me daily that I am so much more than my disease and that I am capable of so much more than I think I am. He pushes me to new boundaries and helps set even bigger expectations for the future.
Instead of looking at what I can't do, he has learned to accommodate what I can do. He has taken me on many camping, rafting, and kayaking trips, all while needing
supplemental oxygen and breathing treatments every four hours.
Being sick (or getting sicker) doesn't mean you are any less of a person to love. You just have to find that person who is patient enough to stick by you through the good times and bad.
A CFer needs a strong, independent, and stable partner. But also, they need to be tender and caring because when we are sick, we may need them to make decisions for us in the future. You don't want to put your life in just anyone's hands, no matter how
much you care about someone. There are good people and partners out there for everyone, you just have to be patient.
Remember to take your time, love life, and just breathe one breath at a time!
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Adult with CF
Kassandra was diagnosed with CF before birth and adventures through life one breath at a time. Every day is a new adventure, and she enjoys hiking, kayaking, and paddle boarding. Kassandra is passionate about showing others that people with CF can do anything they set their minds to, and loves to push the boundaries of what society considers “possible” for someone with her disease. Follow Kassandra on Facebook and Instagram @thesassyCFer_.
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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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