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.
I have found that using simple techniques help me cope much more effectively with cystic fibrosis -- and all that can go along with it.
September 24, 2018
CF Is in My Lungs and I'm Trying to Keep It Out of My Head
Demystifying the Colonoscopy
There is a universal truth about emotional wellness: There is a connection between what is happening in your mind and how that manifests in your body.
Since cystic fibrosis is basically 70 percent of my life, I have to assume the opposite is true, as well; what is happening in my body, most certainly, affects my mind. On bad days, I can't help but focus on every deep breath I can't take and sigh in
frustration at every high blood sugar measurement. I find it exhausting to smile when I feel like a rubber band is wrapped around my chest after walking up the stairs in my house.
Emotional wellness, among other things, is about learning to accept the bad days for what they are and move on. I am allowed to be frustrated that I can't walk up the
stairs, but it is vital for my mental well-being to not let that frustration last longer than it has to. A pebble drops in the water and creates a ripple, but the ripple only goes as far as it is supposed to, no further. My frustration does not need
to live beyond the top of the stairs.
The frustration I feel about not being able to walk up the stairs without having to catch my breath is not necessarily what is really happening. At the root of the problem, there is no problem. I walked up the stairs -- that was my goal. My feeling of
frustration was created by my judgment about how my body “should” have performed. And, analyzing this thought process helped me to recognize this thinking as distorted. Frustration didn't happen. I created it. As I found myself going through these
philosophical equations about my body and my mind, I decided to create an emotional wellness toolkit: simple ideas to keep me grounded during times that are not at all simple.
Funny, right? I remember sitting in a doctor's office, looking at images of my body, trying to understand them myself before the doctor walked in. When he came in, he was looking down at my chart. He said to me, “I think everything looks good here.” I
was confused. He hadn't examined the part of my body I had gone there to get checked out. Did he even know what he was looking for? I expressed my concern, which was pain. He told me what not to do and to come back if the pain still bothered me.
I remember this moment because it was then that I learned to breathe, despite my inability to actually breathe. I took a deep breath. I have always had the tendency to overreact; overreact to nurses coming into my room too early when I am in the hospital;
overreact to a doctor prescribing me a medication that I have repeatedly asked not to be put on; overreact to stares when I cough in public; overreact to people who think I cannot do the same things they can because I have CF. But, when I learned
to stop and breathe, everything changed.
My relationships with my care teams changed. My relationships with strangers changed. My relationship with me changed. Practicing breathing instead of reacting gives me clarity. Here's the
trick: When I feel my heart start racing, when I feel my thoughts start to overwhelm me, and when I feel myself not listening to the speaker but, instead, coming up with a response, I stop. I take a deep breath. Sometimes I close my eyes. And I wait.
I wait for my heart rate to go down. I wait for all of the rushing thoughts to leave. Then, and only then, do I respond.
The other day I got an exorbitant medical bill in the mail. I spent the next four and a half hours on the phone, being transferred, hanging up, calling back, raising my voice, verifying my personal information way too many times, and then finally, resolving
the issue. Needless to say, I was beyond angry. Breathing helped, but what helped even more was moving.
Most of the time I put my shoes on and get out in the front yard or walk around my neighborhood. If that doesn't work, I put a yoga video on. I dance around the house. I draw. I sing. Moving my body any which way is energizing. Here's the trick: I turn
off, disconnect, and find something to do that involves moving my body around. It's almost always different every single time, but moving in some way always works. It doesn't necessarily take a long time. Sometimes, 10 minutes gets me back to my center
and puts a smile back on my face.
I used to think it was a waste of time -- that I didn't have even 10 minutes to spare. But, taking 10 minutes has made “work” time more productive and keeps my heart and mind centered.
A bad feeling or a bad day is not indicative of a bad life. Even a bad diagnosis is not the ”end all be all” of good things and a good life. Life moves forward every second. It is my choice to stay in a moment or to learn from that moment and move on.
Case in point: lung function tests. There is a good week before clinic where I worry over my number, and then clinic day is always
stressful. When I see my respiratory therapist come into the room, I am both excited and nervous. Why? It's just a number. Here's the trick: When I am feeling overwhelmed, I remind myself over and over (and over) that no matter what happens, the sun
will rise. My therapist taught me that. She taught me that staying evidence-based -- instead of what-if based -- keeps my thoughts from taking over. Evidence-based is that the sun will rise no matter what. Even if I can't see it, and even if it is
covered by clouds, the sun is still going to rise. This will always be true. And if nothing in my life seems to be on track, I can find comfort in knowing that.
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Adult with CF
Jessika is an adult living with cystic fibrosis and CF-related diabetes. She works from home as a full-time freelance ghostwriter specializing in self-care, relationships, health and wellness, personal finance, and organizational happiness. She is also a professional editor, copywriter, and webmaster. Jessika is a full-time student with a bachelor’s degree in accounting, working towards her master’s in organizational leadership. A full-blown beach bum living on a barrier island on the east coast of Florida, she loves a good book, a good movie, good music, good food, and a good cup of coffee. Jessika spends her free time traveling and at the beach with her boyfriend (thanks honey), in the sun, sand, and in the ocean. She is also a director with the USACFA and volunteers with the GFWC. You can contact Jessika via Instagram, Facebook, or email at firstname.lastname@example.org.
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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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