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.
After my last hospitalization, I faced new challenges and issues related to my cystic fibrosis -- including panic attacks and supplemental oxygen. Although it's been difficult adjusting to my “new normal,” I am slowly learning how to cope with the uncertainties of my disease.
September 6, 2018
When Lungs Collapse
5 Things I’d Tell a Parent of a Child Newly Diagnosed With CF
Most hospital admissions are unpleasant; you are put in a room where the bed isn't comfortable, the sheets are scratchy, and you're hooked up to monitors and machines that continually check your vitals.
But back in February 2018, none of these typical hospital visit frustrations even registered with me. A simple cold had wreaked total havoc on my body and my already damaged lungs. I was in so much pain, I wasn't even annoyed that I had to go to the emergency department.
Through choking sobs, I laid on the gurney and began explaining to my mom that I started coughing uncontrollably, couldn't catch my breath, and started to have a panic attack in the middle of the night. It was such a traumatic experience, as I'd never suffered panic attacks before. My worst fears overwhelmed my brain and I didn't know how to stop myself from spiraling completely. It took me a while to finally calm down as I continually told myself that I was going to be okay … it was all going to be okay … but my nerves were shot, and I was completely depleted physically and mentally.
I was in the hospital for a total of 15 days -- almost 10 of which I had high fevers that left me without an appetite. I ended up losing close to 10 pounds and became very weak. I could only take short walks and they left me exhausted and short of breath -- even showering became tiring.
This unexpected turn in my disease left me feeling anxious about what my life would now look like.
I began by sharing my worries and feelings with the CF psychologist on my care team. After our talk, we decided it would be wise for me to start taking a medication to help with anxiety. Although I was nervous about taking an anti-anxiety medication because I didn't want to feel like a zombie or be totally checked out, I was reassured this wouldn't happen, and have been able to manage my anxiety much better. Occasionally, I still get “mini” panic attacks, but when this happens, I go through breathing exercises and just have to repeat to myself that I am going to be okay.
I've also been on supplemental oxygen for several months and will be indefinitely. It has been a challenge adapting to my “new normal.” For starters, I never realized how much freedom I had until I was placed on supplemental oxygen.
Before, if I needed to go to the grocery store, I could just grab my purse, keys, and reusable bags and head out the door. Now, I have to make sure my portable oxygen concentrator battery is charged enough to last me the whole time I'm gone. I also become fatigued a lot faster, which is why now I must try to space out appointments, activities, and time with family and friends because I need a day in between to recover and rest.
In addition, I have to fill out special paperwork and get permission from my doctor stating that it is safe for me to travel by air, and make sure that I have enough batteries for my portable oxygen concentrator to last the entire flight since liquid oxygen tanks are not allowed onboard.
I'm still trying to figure out my new normal, and I'm constantly fixing my nasal cannula and getting tangled up in oxygen tubing. But, like everything, I know that it won't be this way forever. For now, I am just going with the flow and riding the wave we call life.
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Adult with CF
Born in St. Louis, Mo. but raised in Wichita, Kan., Elizabeth was diagnosed with cystic fibrosis at 4 months old. The youngest of three, and the only child with CF, Elizabeth's health began to decline during her sophomore year of college, causing her
to withdraw from school and move home. Three years ago, Elizabeth moved to the Bay Area to focus on her health. Despite the progression of her disease, Elizabeth enjoys traveling, photography, reading, and buying too many sweaters for her little dog,
Tucker. You can find her chronicling her journey of living, not merely existing on Instagram: saltywoman65.
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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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