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.
Cystic fibrosis is a complex disease that affects each person living with it differently. I think it's so important for us to learn to understand each other, so I've come up with things I wish others knew about me and my specific experiences with CF.
December 13, 2018
Finding the Strength to Ask for Help
Feeling Guilty for Feeling Good
I think most people living with cystic fibrosis have thought at one point or another, “I wish people knew _____ about my life with CF.” We frequently experience uncomfortable situations, frustrating encounters, guilt, misplaced obligation, and misunderstandings. To put it simply, people just don't understand what our lives are really like; it's nearly impossible to do so unless you're actually living with CF.
Even those closest to us don't fully understand because they can't feel what we feel.
Since CF can vary so much from person to person, there are even huge differences of understanding between two people who both live with the disease. But, knowing some key things can help bridge the gap.
Here are some things that I wish people knew about my life with CF.
I wish people understood that CF doesn't just impact a person physically. CF is also a matter of mental and emotional health. Handling the physical limitations of cystic fibrosis, coping with a shorter life expectancy, and dealing with a sometimes lesser quality of life are all huge parts of living with this disease. It is so important to understand but, regrettably, treating mental health issues is only now becoming a big focus in CF care.
I wish people felt like they could ask me questions.
Claire Wineland was so open about her life and her disease, and I think she helped give others the strength to open a lot of doors that they were scared to knock on. Since I was diagnosed in the second grade, I have never wanted anyone to feel like they couldn't ask me questions about CF -- it's the only way to avoid misconceptions. I always welcome genuine interest or curiosity. I'm not ashamed of having CF and your willingness to broach the subject lets me know that you see me and that you care. But if you ask, please listen.
I wish people knew how easily I get sick. Especially during the winter months, please, please, please stay away from me if you are even slightly sick. People with CF get sick really easily. It may be just a slight cough and runny nose to you, but if I catch what you have, I could be down for weeks trying to get over that “little” cold. I will never be mad if you reschedule plans because you are feeling under the weather. For people whose CF is more advanced than mine, or for people who have received a lung transplant, this risk is magnified. A little cold or virus likely means hospitalization and could even lead to death.
I wish my friends understood why I don't make plans with them. As I have gotten older, it's harder for me to drink and stay up late. In college, I was usually able to keep up with my friends when we went out drinking (I don't advise it, though). If I'm being honest, I really do enjoy a glass of wine or craft beer; but now, having more than one drink makes me feel like absolute crap. Therefore, I usually avoid social scenes because the pressure to keep up by drinking copious amounts and staying up past my 10 p.m. bedtime (yes, I am an old lady) just isn't worth my lungs getting sick and my body feeling tired and achy for days. Instead of sleeping all day, I would much rather get up at a decent time on a Saturday, go for a run, and spend the day hanging out with my husband and dogs. If you want to make time for our friendship, let's do something that isn't focused around drinking all night -- really, let's do anything else!
I wish people understood why I make certain decisions. CF has a way of helping you prioritize your life; I'm always thinking about what is most important to me. At the top of my list are spending time with my family, taking care of my health, seeing the world, and making a positive impact on the people in my life and our planet. I have a pretty low threshold for things that don't matter to me or things that feel like a waste of time. A few years ago, when I was working at a job that made me feel empty (horrible boss, long hours, little flexibility, etc.), I made the decision to quit without another job lined up. I simply couldn't waste any more time there, and I was getting sick because of the stress and lack of time to take care of myself.
Maybe you relate to these things, maybe you don't. Maybe you have CF, maybe you don't. I think it's important to take time to better understand the people in your life, regardless of whether or not they are sick. These are a few of the things that I wish people knew about me; what do you wish people knew about you?
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Adult with CF
Morgan lives with her husband, Kory, and twin babies, Alder and Winslow, in rural northeast Kansas where she enjoys gardening and chicken-keeping. She has many interests and is always entertaining her curiosity, but her mainstays are spending time outside,
reading, writing, photography, and cultivating a relationship with plants. She grew up with two younger siblings, Allison and Mason, who also live with CF. You can follow her on Instagram. P.S.
Beets, Bears, Battlestar Galactica.
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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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