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.
I've learned that what I tell myself about how cystic fibrosis affects me, affects my belief in what I can achieve, and how I feel about myself as a person.
September 26, 2018
Finding My CF Mom Tribe
My Emotional Wellness Toolkit
Storytelling. We see it. We hear it. We live it.
We're drawn to stories, whether we get them from a book, a movie, a blog, our social media feeds, or gossip from our friends. Stories are what make our lives work. Stories are the way we pass information along with emotional attachment.
So what stories are you telling yourself?
When it comes to having cystic fibrosis, the daily story I used to tell myself were those of condemnation, worry, and judgment.
“You're too sick to do that.”
“If I didn't have CF, my life would we be so much better.”
“If I decide to do that, will I be too sick? Will I even be able to finish it?”
The narrative I had painted of myself because of my CF was vile. I brought myself down second after second because I never felt good enough about my life, and I blamed it on CF. It was an easy out. Now, don't get me wrong; there definitely are things CF keeps me from doing from time to time. But, the story of CF completely stopping me from doing what I wanted to do ... I was creating that.
There definitely were times where I could've done more and held back because I blamed it on CF -- because of the story I was telling myself. I also discovered that what I was telling myself also affected how I viewed myself as a person.
“I'm no good because of my CF.”
That constant assertion happened in my head for years and years. When I set on my path to grow as a person, I accidentally stumbled onto a way to change the story.
Little by little, I grew to understand my life with CF. I began to realize that the old narrative of not being good enough would show up when I was experiencing symptoms. When my symptoms died down a bit, and I was feeling healthier, the narrative would become more positive.
When I was healthy, I would tell myself things like, “I can beat this.”
“I am more than my CF.”
“I can love myself, even with CF.”
This alternating pattern continued. Feeling positively or negatively about myself depended on how I felt. As time passed, I learned that how I felt about my CF could empower me or paralyze me. But, it wasn't based on my symptoms; it was based on the story I told myself.
I realized that even when I was feeling terribly sick, if the story I told myself didn't reflect that, I didn't feel as bad. If I was sick, but I told myself positive stories, then I continued living my life despite my symptoms.
The same thing would happen when I felt good. If I told myself negative stories, I noticed my symptoms would be more severe.
The stories I tell myself affect the outcome of my life. I will always have symptoms when it comes to CF, but if I shift the stories I'm telling myself, I can bring myself healing. I can learn to thrive whether I'm having symptoms or not and be proactive about not setting myself up mentally to activate flare-ups.
In society, stories run through the news, marketing, entertainment, and other outlets that then convince us to buy this or buy that. Stories are used every day to manipulate me to adopt another person's agenda. I've decided not to be my own worst enemy by planting a story in my own mind that manipulates me into sickness.
I pay attention to the narratives I conjure up. I ask myself, “Will you empower yourself, or will you paralyze yourself?” It's my choice.
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Adult with CF
Bobby is a content creator, a rapper/producer, and a certified life coach who was diagnosed with cystic fibrosis at birth. He graduated with a degree in creative writing from the University of Central Florida. Bobby is currently on a path to bring awareness and change through music. You can find Bobby on his website, Bobby Foster Speaks.
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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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