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.
There were three important things that my parents did for me while I was growing up that helped me become an independent and positive person.
Lauren Bombardier Weeks
March 1, 2016
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The question that I get
asked most often from parents
of children with cystic fibrosis is, how did my parents do it? What was
their secret to raising someone who is independent, positive and living a full
They were honest.
The day I learned that
CF was fatal was also the day that my mother taught me to be realistic, to
look on the bright side and to never let CF get in the way of me living my
life. I was doing a fifth grade research project on a topic of my choice,
which was CF, and my mother had given me a book to read. The very first
sentence was: "Cystic fibrosis is a chronic, life-threatening disease." I
didn't quite have a grasp on what "chronic" and "life-threatening" meant so I
asked my mother, the nurse, to explain it to me. "Well," she said, "It means
that cystic fibrosis doesn't go away, and some people die from it. But you
know what? You can also get killed by getting hit by a bus or in a car
accident. So the best thing to do is to just live your life and enjoy every
Celebrating the approval of Orkambi!
They never let me sacrifice anything because of
A few years later, I found out that I would need to be in
the hospital during my first semi-formal school dance. Our school had a rule
that you weren't allowed to go to the dance if you were absent from school
that day. When my mother called the principal to discuss the matter, he
exhibited some hesitation in bending the rules for me, so she calmly stepped
outside and told him, "We have NEVER let CF get in the way of Lauren living
her life. We have NEVER put her in a bubble." So, sure enough, after having
emergency surgery and being in the hospital for a week, I put on my red,
sparkly dress in the hospital bathroom, curled my hair and my dad swept me
away down I-93 in my chariot -- the family mini-van -- to the middle school
Climbing Mt. Lafayette in New Hampshire with my dad.
They made sure I had fun.
hospital stay, although scary, was filled with memories of visitors,
presents, games and fun. My mother stayed by my side and my father brought us
home-cooked meals every night. My mother made every hospital visit an
adventure, like taking me down to the jukebox late at night and dancing with
me on the empty stage. My father would take me to the candy shop to reward me
my treatments and he played cards and games with me during these
"treatment times." When friends came to visit me at the hospital, we would
give them rides on the hospital bed, raising it as high as it would go. And
when I first got my vest,
we would sing songs together and laugh at my shaking voice … I may or may not
still do this and send videos of it to friends.
Although years later, my
mom would confess to me how worried she was during those times, she never
made CF a big deal, so I never made CF a big deal. It was this attitude that
has allowed me to live my life despite having CF. This attitude is what led
me to participate
in gym class (taking breaks when needed); to swim in lakes, ponds and
public pools; to go out to my favorite restaurants without disinfecting the
entire table; to have sleepovers; to go to public school (even during flu
season); and to take my enzymes
at school without having to be supervised by the school nurse. Although they
wanted to protect me, my parents understood that this short life would be
nothing without quality. What sort of life would it be if I was kept in a
CF wasn't supposed to be an intrusion into my life, so
I grew up never letting it be.
When CF parents ask me for
advice, I always tell them to treat their child no differently than they would
treat a child without CF. Yes, they should make taking care of themselves a
priority, but it is important to do so without sacrificing the beautiful
moments of life.
Lauren Bombardier Weeks
Adult with CF
Lauren is 27 years old and is from Massachusetts, where she enjoys running, hiking, and skiing with her husband, Kyle. She works full time in human resources for a nonprofit focused on improving education and health worldwide and is the author of the blog, “I Have CF, So What!?” Lauren also is working on her first book entitled, “Growing Up Sick,” which details how her parents gave her the strength to live her life despite CF. Read her blog, at http://thesowhatlife.com.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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