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.
Religiously following a schedule and maintaining a to-do list may not seem like much fun, but they have brought sanity and wellness to a hectic life filled with graduate classes and cystic fibrosis treatments.
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Boring, planned, and routine are all words used to describe the set up for an amazing day, right? As crazy as it seems, it is the routine and planned days that have set the road for my success over the short- and long-term throughout my life.
Since my diagnosis of cystic fibrosis at age 12, I have slowly found myself taking as much control of the variables in my life that I possibly can to have more predictable outcomes in my health, wellness, and even in my current graduate level coursework. Every morning my alarm goes off at 5:03 sharp, followed by the reminder alarm at 5:06 that, yes, it really is time to get the day going. I hop straight out of bed, throw on my gym clothes for my morning workout, and cruise out the door with my wife by 5:25.
After pushing myself to the limit (as well as the typical cough and more), I get home ready to load up on my favorite protein pancakes sprinkled with cinnamon, topped with plain Greek yogurt and fresh berries by the handful for the natural sweetness. This basic breakfast is my usual go-to and has been for most of the past year. It may seem entirely simple and boring, but having control over something as simple as my morning routine sets up my entire day.
To be entirely honest, I have come to appreciate the times I feel most in control of my life, as some days cystic fibrosis takes that control factor away, and I feel like I am at the mercy of the moment.
The challenges I have felt throughout my adult life with CF were further amplified this past summer as I began my pursuit of a master's degree in business administration. Routine times for my workouts, meals, snacks, and -- of course -- cystic fibrosis-related treatments and chores became crucial to my early successes.
My routine was tested at the very beginning of my graduate level studies, as I began at-home IV antibiotics during the first quarter, something I had been extremely fortunate to avoid for some time. The stress and extreme fatigue I felt from the combination of the antibiotics, my studies, and fitting in all my extra treatments and medications were impossible to ignore.
However, I found that having a schedule and routine in place made everything seem more doable. I wrote down my schedule for each day with timeframes for when I would accomplish each task and -- upon completion -- I would cross each off with a giant line. I found the stress slowly declined as the repetitive nature of it all began to feel manageable and routine. I saw it as just another assignment, another chore, or another obstacle to overcome.
Needless to say, I felt that having my plan written down on paper allowed me to focus on each task and day individually as it came, instead of everything all at once. This was huge especially as I battled exhaustion throughout my treatment. Before I knew it, I had dominated a couple of weeks of antibiotics via my PICC line and was on an upward trend.
I remember the day I was diagnosed so vividly. I can picture my family kitchen and where I was sitting 19 years ago when my parents and family told me I had CF. It was the reason for my excruciating stomach pains, as well as the cause of my recent decline in lung function.The two pills my mother gave me that morning turned out to be the digestive enzymes my body severely lacked and was truly the beginning of the never-ending learning process of living with cystic fibrosis.
Throughout the crazy, scary, and unpredictable nature of my battle with CF, I have found structure, routine, and my stubborn, never-give-up attitude to be major strengths in the fight against this disease.
My diet, exercise, mental health, treatments, and schooling are much more manageable because of my regimen, and I believe it has been a key factor in maintaining my health as I take on CF with every ounce of my being.
Adult with CF
Marco lives in Washington state with his wife of five years, Sarah, and 3-year-old chocolate lab, Cedar. His interests include sports (soccer, basketball, tennis), fitness, nutrition, hiking, and exploring the outdoors with family and friends. Marc has
held and participated in two different fundraising events in 2019 for cystic fibrosis with his wife raising over $10,000 for the cure! Readers can find him on Instagram at marco.rosales65roses.
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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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