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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
Our goal is to educate policy makers about the needs of people with cystic fibrosis so that they make smart decisions about CF-related research, treatment, and access to care.
We recognize the value of tapping into the expertise that only people with CF and their families have. We invite you to share insights to help improve and develop programs and services that support the daily lives of people with CF.
Our mission is to find a cure for cystic fibrosis and improve the quality of life for those living with the disease. We can't do it alone. Help us add tomorrows by giving today.
In addition to working for a cure, the CF Foundation supports programs and policies to improve the lives of people with CF. Help us by raising awareness of CF, participating in a fundraising event, or volunteering with your local chapter.
Cystic fibrosis may impact your health and productivity, but life doesn't stop just because you're feeling ill. Although CF can sometimes make it difficult to maintain your responsibilities, I've learned a few tricks over the past 30-odd years to stay productively motivated and take it one step at a time.
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Sometimes, it can feel like the odds are really stacked against us.
For example, a few months ago, I was given the opportunity to write for the CF Community Blog. A few days before my deadline, my boyfriend had to make his first 9-1-1 call on my behalf. I spent the following days trying to rest, while anxiously awaiting test results. Not only was I fearful that another 9-1-1 call would have to take place on my behalf, but I was also stewing about the fact that I had work assignments that needed to be finished, schoolwork that was due, and a deadline for this post that I absolutely was going to miss or had missed already.
In moments like this -- when CF life and real-life come together and form the perfect storm -- being motivated and productive can prove to be overwhelmingly difficult.
Although I was in a tough spot medically, I knew that I needed to figure out my deadlines and contact school and work. So, how did I motivate myself to handle this situation productively? As luck would have it, I have learned a few tricks over the past 30-odd years:
I didn't always work full time and I wasn't always in school, so being productively motivated was a challenge when I felt like I had nothing to do except have CF. Although I had to get creative at times, I eventually learned that getting motivated to do just one load of laundry would help me feel productive enough to do something else around the house or -- better yet -- get out of the house completely.
Hellen Keller said, “I long to accomplish a noble task, but it is my chief duty to accomplish small tasks as if they were great and noble.” I don't think there is a quote more suitable. Find your thing. Find what motivates you to be productive; write, make art, exercise, get the mail, volunteer one day a month -- the possibilities are endless.
Whether you use your computer, your phone, or an old-school journal, writing out what you have to do -- and when you have to do it -- is vital for staying motivated. We can become so consumed with so many things, that it can be nearly impossible to try and remember everything that needs to get done.
I have a friend who sets reminders on her phone for everything because she is always on the move. Alarms go off to remind her to check her sugar levels, eat, take meds, make phone calls, etc. For me, I write in a journal and I keep lists -- so many lists. No matter what you choose, every minute, every hour, and every day is a chance to start writing stuff down and making a change. It is as easy as starting one list. Write down all the medications you take -- and when -- and then try to stick with a schedule.
They say it takes 30 days to form a habit and 90 days to create a lifestyle. Today is your day!
I have a rule that I only put three things on my to-do list a day, since being too busy can surprisingly un-motivate you and cause you to shut down. Realistic prioritization is key.
Since I work and go to school, I usually have one work item and one school item on my list every day. The third item is sometimes an extracurricular activity, but it is also something that might need to get done -- such as finding a new specialist, spending three hours on the phone with one of my insurance companies, or fighting a medical bill on my credit report.
Remember: No matter what, everything is going to be okay. Take responsibility and apologize for what you can control and let go of what you can't. Although I made a commitment to school and to work, all I could do was apologize for missing the deadline and not completing the assignment, and then make up the work when I could.
There is something to be said about taking your commitments seriously, but there is also beauty in realizing that the world is not going to come crashing down if something does not get done. Stay flexible and positive; move around schedules so that they work for you. Worrying only makes you suffer twice.
It took a long time for me to realize that I am not at war with my body, and that being at war with my body meant being at war with my productivity and my motivation. Realizing that my body fights with me every single second of every single day keeps me motivated to give it what it needs (and sometimes, what it wants) in order to stay productive.
When you start working with your body, you can even feel motivated to rest. You can watch Harry Potter movies all day and feel productive knowing that you gave your body exactly what it needed.
No matter what, your journey is YOUR journey, and it is okay to change that journey every single day until you find what works for you.
This may mean making lists, setting alarms, posting sticky notes, or creating a huge chalkboard wall in your bedroom. It may also mean sleeping for two days and making that not-so-urgent call later, or getting everything you need to get done for the week done in one day. The key is to keep going and to keep moving.
Being productively motivated is individualistic. It really is true that it's okay if the only thing you did today was breathe. But, try and do something else, too. You got this!
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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 full-time student with a bachelor’s degree in accounting, working toward her master’s in organizational leadership. A full-blown beach bum living on the East Coast of Florida who loves Jesus Christ and coffee, Jessika spends her free time traveling and at the beach with her boyfriend. She also has a healthy obsession with learning, face masks, pizza, and dancing in her kitchen. You can email Jessika at firstname.lastname@example.org.
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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