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.
In the age of social media, finding a balance between appearing normal and wanting people to know when you're sick or in the hospital is no easy task -- especially when you have an invisible disease like cystic fibrosis.
May 9, 2018
How I Finally Found the Community I Needed
How My Perception of the Vest Changed
The other day, I opened my favorite social media app, Instagram, and started clicking through people's Instagram “stories.” I came across one girl who was posting pictures from the hospital complaining about how sick she was. As a reflex, I found
myself rolling my eyes and thinking to myself, “Wow, this chick is thirsty for attention.”
Then, I stopped and thought about the time I was in the hospital two years ago and posted a picture of the flowers my boyfriend at the time had sent to me in my hospital room.
Why did I post that? Sure, I had wanted people to see I had a great, supportive boyfriend. But, deep down, I definitely wanted people to know I was sick and being hospitalized. I don't think I necessarily wanted them to feel bad for me, but I certainly
wanted people to be aware of what was happening and -- maybe -- reach out to me.
Being hospitalized is extremely isolating, especially for people with CF, who are quarantined to their rooms to minimize the spread of bacterial infections between patients.
Balancing this isolation and sickness with trying to have a normal, everyday life is extremely challenging.
On the one hand, having an invisible disease has its perks because people don't necessarily have to know you're sick unless you tell them. But on the other hand, it also means that you have to figure out how to actually tell them at some point, which
can be tricky. Is there an elegant way to tell people, “Hi, I know I was at happy hour the other day and seemed totally fine and normal, but I've slowly been getting sicker and sicker and today I woke up running a fever and couldn't breathe so now
I'm in the hospital and lonely and need you to reach out to me and understand?”
If there is, I certainly haven't mastered it yet.
So yes, when I'm sick I want attention -- but the good kind of attention, not the bad -- and there is a very fine line between the two. I want people to ask me how I'm feeling, but I don't want them to feel like they can't invite me out anymore because
I have this disease.
I want people to care and be concerned, but not to comment on every cough attack I have or feel like my CF is the only thing I want to talk about. I want my co-workers to understand why I might be struggling to meet some deadlines this week, but not to
think I'm less capable or my skills are compromised because I have this disease. I want them to see that I work harder because I have this disease, not the other way around.
So, next time you see someone posting on social media about being sick or sharing pictures of IV lines from inside the hospital, I hope that instead of rolling your eyes (like I'm guilty of doing), you try and put yourself in their shoes. Try and
think about what they're really saying with their posts and what they really want out of it. Maybe they do want attention; is that so bad?
Adult with CF
Lawren grew up in Sparta, N.J., and was diagnosed with cystic fibrosis when she was 2 years old. After graduating from Temple University in Philadelphia in 2015, Lawren moved to Washington, D.C., to pursue a career in government affairs. She currently works in advocacy and policy for the American Society of Clinical Oncology, where she helps to advocate for and promote improved cancer care for patients. In her free time, Lawren likes to exercise when possible, read, and hang out with friends in the city. Lawren has two brothers and wonderful parents who she credits for helping her maintain her health and happiness.
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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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