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 feel anxious, I go for a run or do a crafting activity to relieve the stress. I used to think I didn't have time for this, but now I know that I need to make time to take care of my mental health.
January 27, 2021
I Got Help for My Depression
My Experience in a COVID-19 Vaccine Trial
We all must find ways that allow us to cope with anxiety. There is no “one-size-fits-all” approach when it comes to our mental health or even cystic fibrosis for that matter. We
are unique. We all experience our health differently, and we should be treated as individuals. Anxiety often can be crippling on your day. You find yourself asking, “What if?'' and “How come?” and “Why not?” to just about everything. It is too much
pressure. We must find the little things that allow us to cope with anxiety on a day-to-day basis.
Trying to break down the day with a coping mechanism relieves the pressure of looking at the day like a big problem that cannot be solved.
I have found that exercise -- particularly running -- and crafting are just some of the ways I can cope with anxiety on my terms. We all make excuses because we want to avoid changes
-- good or bad. Change is uncomfortable, but sometimes it is necessary. Changing the way I look at my days and my habits was the first step I had to take to cope with anxiety. Exercise is not achievable for everyone, but a little exercise here and
there is a really great first step to aid your mental health. Whether it be every day, every other day, or even once a week, fresh air is a great way to clear your head. But sometimes with
CF, exercise is not an option, and when that's the case, crafts are a great way to clear your head too.
Crafts may not seem like something fun to do as a young adult, but it really gets you into a different mindset, similar to exercise. You may say, “Crafts are stupid. They won't help me,” which was a similar thought process I had until I actually tried
it. The more I crafted, the more I found it to be a great distraction.
Small acts that can get you out of your head and away from anxious thoughts are great little ways to cope with anxiety on a small scale.
One thing about anxiety is the fear of “the great unknown” and not being able to control what we don't know. So, things that we do know and are able to control help us the most. I'm not the best runner or even the best painter, but I know that when I'm
feeling stressed or anxious I can count on running and crafting to make me feel more like myself. They are easy, fast, and carefree coping mechanisms that don't take up a lot of time and allow me to break up my day with less anxiety.
These coping mechanisms are not a permanent fix by any means, but they are a great distraction from a stressful daily routine. I used to make 100 excuses every day about why I couldn't take time for myself. But until I did, I was hurting myself by not
caring for my mental health. It's important to take care of our minds the same way we care for our bodies when they are sick; making small changes that allow us to distract ourselves can really start to help.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
I live in Massachusetts, and I am attending law school. I recently graduated from the University of Massachusetts Lowell with a bachelor's degree in political science. Mental health is an important topic, and helping one another in the CF community is
near and dear to my heart. I love to expand my knowledge on a variety of CF topics and help my community in any way I can. You can follow me on Instagram.
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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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