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.
Burkholderia cepacia took a toll on me physically, but overcoming the emotional blow was even more difficult.
November 7, 2017
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When I was diagnosed with cystic fibrosis at 4 months old, my pulmonologist said to my parents, “There will be a lot of different bacteria your daughter will
culture, but the one we hope to never see is Burkholderia cepacia.”
You could say that the first 18 years of my life were “normal,” or as normal a life that anyone with a chronic lung disease can have. It wasn't until I was in the car with my mom and my sister on our way to Destin, Fla., for spring break that we received
the phone call from my nurse coordinator saying that the sputum culture had come back positive for the bacteria.
I had never heard of this “bug” until I realized that I was now the proud new owner of it. B. cepacia are virulent bacteria found naturally in the environment, wet soil, decaying plants, and even the skins of onions, and is dangerous for someone
with CF. The reason I had never heard of B. cepacia before was because only 3 percent of people with CF get it.
After my mom had finished talking with my nurse coordinator and told me the news, I started crying. “I knew it,” I said. “I could feel that's what it was while you were on the phone.” Since I was already on intravenous (IV) antibiotics, my doctor said that I didn't need to come in right away.
Once we were back from our trip, we talked about the next course of action. I had more than 19 hours to process what this meant for me, for my family, and for my future. I didn't realize it then, but my life was completely changed whether I was ready
This is when I went into the Google black hole and started researching B. cepacia. I read articles in medical journals about how it was resistant to multiple antibiotics, statistics on how B. cepacia affects post-transplant survival, and how it could turn deadly if left untreated.
At 18, I was preparing to go away to college; I wasn't ready for this new complication of my disease. The same questions and thoughts kept swirling in
my head. “Will I be able to go away to college?” “Will I now die sooner because of this complication?” These are thoughts no 18-year-old should have to face.
Luckily, my health stabilized, and I was able to go away to college and live the life of a college student. It wasn't until my sophomore year, toward the end of the first semester, that my health took a turn and I had to withdraw and move home. I was
devastated. Moving back home and not being able to finish my undergraduate degree was a blow that took me several years to overcome.
Over the next several years, my health steadily declined. My lung function had gone from a forced expiratory volume (FEV1) of 60 percent to 40 percent. My health began to require hospital stays every 2-3 months, with weeks of IV antibiotics.
I slowly started to become aware that my life could be coming closer and closer to the finish line.
This is when I made the decision to move halfway across the country to the Bay Area to focus on my medical care. It was scary to leave behind everything I knew, but also thrilling in the sense that I felt hope for a better quality of life.
It's been three years since moving to the Bay Area, and I thank God, karma, and the universe for giving me this extra lifeline each day. I am fortunate that right now, my health is stable; but with CF, things are always uncertain.
I still get those swirling thoughts in my mind of whether I'll ever be able to finish my degree, live on my own and be independent, get married, and have a family of my own.
I also wonder whether my lungs will soon no longer be able to give me breath and I will need to have a lung transplant. I don't think those feelings and thoughts will ever cease, but this is the life I have, and I intend to live it.
Adult with CF
Born in St. Louis, Mo. but raised in Wichita, Kan., Elizabeth was diagnosed with cystic fibrosis at 4 months old. The youngest of three, and the only child with CF, Elizabeth's health began to decline during her sophomore year of college, causing her
to withdraw from school and move home. Three years ago, Elizabeth moved to the Bay Area to focus on her health. Despite the progression of her disease, Elizabeth enjoys traveling, photography, reading, and buying too many sweaters for her little dog,
Tucker. You can find her chronicling her journey of living, not merely existing on Instagram: saltywoman65.
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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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