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.
Being separated from my family while I was in college helped me expand my circle and create room in my heart for new relationships. My friends became my second family, and they have been there for me as much as any blood relative.
June 5, 2020
How I Combat CF Survivor’s Guilt
We are committed to listen, learn and continuously improve.
When we think of the word family, we feel that warm and fuzzy feeling inside. We ordinarily think of our parents, maybe our siblings, grandparents, aunts ... but is that the entirety of our family?
Growing up with cystic fibrosis, my blood relatives were so crucial in forming me into the person I am today, instilling the positivity and strength I needed to flourish despite my battles with CF. But now, at age 27, I find myself relying on people outside of that initial bubble for support.
To me, family is everything. Family is everyone.
Family are those people who stand there next to you in your darkest hours, who don't shy away from the ugly truth, and instead stand there strong with you. Sometimes those people are the family we were born into; sometimes they are the family we have chosen over the years; and sometimes -- if we are lucky enough -- it's a combination of the two.
When I was 18, I left home and went to college 1,000 miles away from anyone and everything I had ever known. Though having my family so far away was hard, I came to appreciate the distance as a gift. It allowed me to create a space in my life and in my heart for a new family and a family that -- at times -- is stronger than any blood that I've known. This family consisted of the people who never knew what CF was before they met me, the people who accepted me as I am, and the people who decided to love me because of it, rather than in spite of it.
When I got sick and found myself in a hospital bed thousands of miles away from my blood family, it wasn't Dad I saw walking into my hospital room, or my brother, or an aunt. Instead, I saw friend after friend, who had no blood relation or obligation to be there, showing up for me. They brought food, told jokes, watched trashy reality TV with me, or sent me all the cat memes they could find to just make me laugh. I had begun to realize my family extended far beyond those who shared my last name.
It is a beautifully organic transformation that each person takes into adulthood -- both cherishing the family bonds that created who they are and branching out to make their own family for themselves. Within the Merriam-Webster Dictionary, the initial definition of family that appears is: “The basic unit in society, traditionally consisting of two parents rearing children.” But, this is then followed up by a second definition: “Any of various social units differing from but regarded as equivalent to the traditional family.” As we get older, we realize how many different images of family there are, each as precious as the next.
With a disease like CF, family is crucial in supporting us, hearing our feelings, crying with us, laughing with us, reminding us it will be OK, and loving us through the hardest parts of life more than anyone could ever imagine. Even if you are the one with CF, you know how impactful this disease can be for those closest to you -- those relatives who don't know what birthday may be the last; those friends and spouses who came later in life but love you as if they have been there all along. Just as us CFers need support, our families of all shapes and sizes do too. This is why the CF Foundation created FamilyCon, which I am co-chairing this year. I would not be here without the support of all my different types of family.
I know how important it is to lean on one another, how necessary it is to have people around you who see the light when you just want to hide in the dark.
FamilyCon is a time to celebrate what family means and give back to those who have given so much. It is a place for parents, caregivers, friends, siblings, and any other member of our families to come, connect with others, share their stories, and learn how to tackle this disease together. There are breakout sessions for spouses, parents, siblings, and CFers to talk about the real, raw, funny, and hard-to-talk-about topics with one another. I hope you will join me, my family, and so many others at FamilyCon this year, June 18 and 20!
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Chelsea is a 27-year-old adult who was diagnosed with cystic fibrosis at four months of age. Consumed by wanderlust, she is a go-getter with a zest for life who has never let CF stop her. Chelsea graduated college cum laude with a bachelor’s degree
in psychology despite many health hurdles and has channeled her passion for helping others into everything she does. In 2019, she co-chaired BreatheCon, a virtual event for adults living with CF. Chelsea continues to work very closely with the amazing
research doctors at Johns Hopkins Medicine, helping to raise funds for CF research as well as share her own story and positivity through her social media channels. Chelsea is a registered yoga teacher and actively teaches for the CF community. She
is also a first mate on sailboats, exploring the sea every day! She lives on the Caribbean island of St. Thomas, U.S. Virgin Islands, where you can find her teaching yoga, sailing, traveling, or showing those around her that cystic fibrosis does not
define what she is capable of. You can follow her journey and adventures living with CF on her Instagram or Facebook.
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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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