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.
When I was diagnosed with cystic fibrosis at age 40, I was in denial at first. Then, I compartmentalized my CF, relegating it to a small part of my life. Now I have embraced my diagnosis, and I have become a CF advocate, fundraiser, and blogger.
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At 40 years old, I was told I had cystic fibrosis and was lucky to have been so healthy. As the test results and statement marinated, my mind surged with emotions. I tried to pinpoint how I felt, but all I could think of was, "What luck?" Managing frequent
sinus and respiratory infections along with gastrointestinal issues did not seem so healthy to me. Health was my life's nemesis! Nowhere in my medical record was there a four-leaf clover, and getting diagnosed with cystic fibrosis is not a pot of gold to go in search of.
My family was introduced to cystic fibrosis in the late '80s. My cousin, Marlene, was diagnosed as a baby. Being 12 years older than Marlene, I watched her grow into a beautiful 28-year-old woman who battled CF every day as a warrior does. It was only
months after my diagnosis that Marlene passed away due to complications from CF.
I was in a grief-stricken state, and disbelief in my diagnosis grew.
For months, a perpetual mental tantrum played out in my head. It was like I reverted to a toddler's mind. I questioned everything. I was desperate to protect what was mine: the vision of what my life was and how I planned for it to be, neither of which
included cystic fibrosis.
I hated this horrible disease for how it made me feel and for what it made me think. I resolved not to let it affect everything important to me or let it near anything that I loved. I delicately compartmentalized my life and secretly surrendered to denial.
I wanted control over my grief. Unconsciously, I built a barricade between me, the person, and me, the patient. My compartment plan allowed me to retain my life and identity
as a mom, wife, and professional, separate from CF. I thought that by confining CF, I could successfully control the distress it causes. I found out differently. At times, CF jumped the barricade and went freewheeling through my life. The very existence
I created to survive was breaking down, and I was exhausted.
From the start, I faithfully went to clinic appointments every three months. The care team took an active interest in learning about me beyond CF. More than a great rapport blossomed; trust was built, and a relationship
formed. On several occasions, CF-related information and materials were offered. I typically declined, except once. There was a virtual conference that had some fascinating topics, plus family
was also welcome. For me, this seemed like a perfect opportunity to finally bring segments of my life together.
I told my husband about the conference. He was interested in attending and wanted to learn more about CF. We each registered for breakout sessions that individually appealed to us. The virtual space was supportive, informative, and educational. After
the conference, we debriefed on what we learned during the sessions. We both agreed the conference was inspiring. As we wrapped up our conversation, my husband had one last observation to share.
He said, "I'm curious -- why do you introduce yourself as a patient with CF, and not just, 'I have CF'?" Right then, my denial was exposed.
Thinking that I could put CF in a box, along with my feelings about it seems silly. Getting diagnosed with CF was an aspect of my life I just wanted to avoid. It hurt, but the only way I could heal was to face what needed to change. By acknowledging my
denial and facing reality, I regained the courage to discover new possibilities.
I renewed my life's purpose to community service and my belief that everyone deserves to be well and empowered to thrive. Going through this process revealed the meaning in my diagnosis; it enabled me to get involved and deepened
my commitment to helping others. I am excited to fundraise for the annual Great Strides Walk, along with participating in CF FamilyCon,
CF ResearchCon, advocacy alerts, Community Voice, and the community blog. I joined
my CF care center's Patient-Family Advisory Board and Quality Improvement Team. I am also privileged to be a member of the Compass Advisory Board and its mission
to help all people with cystic fibrosis, their families, and their care teams with insurance, financial, legal, and other challenges related to life with CF.
Sometimes, I reflect on the day I learned that I had CF. I still have mixed feelings about the diagnosis, but it helps to remember I was born with CF. It just presented later in my life. I do suppose there is a bit of luck in that!
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Kristina is the principal consultant and foundress of Halite Solutions Group and an accomplished community/population health professional. She believes every community deserves to be well and empowered to thrive. Kristina’s passion is to improve patient
and family experiences with the aim of addressing health equity. When Kristina isn’t working or volunteering, she enjoys “adventuring” with her husband, Dave, and son, Austin. Their adventures often include relaxing on the beach, gazing at stars,
hiking national parks, going to sporting events, and visiting their extended families in Cleveland and Denver. Follow her on Twitter @HaliteSolutions.
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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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