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.
Unless you have cystic fibrosis or live with someone who does, it's hard to truly understand the full impact of this disease. Through the power of storytelling, these CF community members are helping to bridge that gap of understanding. Check out the latest books and films created by people intimately familiar with CF.
May 3, 2018
How My Perception of the Vest Changed
No-Stress Travel Tips for People With CF
Lauren Bombardier WeeksAuthor, Growing Up Sick
I keep finding myself on Facebook chat talking to parents of kids with CF who just don't know where to turn. How do I get my kid to do his treatments? How do I protect him? How do I make sure he grows up with the same positive perspective as you? What
did your parents do that gave you this attitude?
Growing Up Sick blossomed out of these tough conversations. Part memoir, part advice for parents raising a child with cystic fibrosis, or any other debilitating illness or disability, Growing Up Sick tells the story of how my parents guided me from a
toddler who ran away at the mention of “treatment time,” to a teenager who feared for her future and skipped her medications, to an adult who went to college, improved her lung function, and chose to say “so what?!” when faced with the prospect of
a short life by climbing mountains, running races, and breathing in the small moments instead of using CF as an excuse to procrastinate living.
As a parent, you will learn the tricks to get smiling kids in the hospital, how to talk about death with your child, how to get your kid to be compliant, how to navigate obstacles like taking medicine in school, and most importantly, how to use something
you already do as a catalyst for creating a positive attitude for yourself and your family. Growing Up Sick will give you the tools to give your child the life you're worrying they'll miss out on.
Visit thesowhatlife.com/books to grab a sneak peak of the book and stay up-to-date on its release.
M.C. CooperAuthor, Ki-Ki's Bedtime Story
Ki-Ki's Bedtime Story
is a delightful tale about a little girl with CF and the magical powers her mother uses to keep her daughter healthy and her spirits up. After tucking her in at night, the mother goes on an extraordinary journey into Kiki's lungs
to fight this disease head-on. The story emphasizes the power of positive symbology and the effects it has on fighting the detrimental effects of a chronic illness.
My daughter, Chrissy (Kiki) was born in 1989, before the gene that causes CF was discovered. I was determined to help my daughter live a normal life, knowing that it would involve hard work and determination. I have instilled the importance of living
life with a healthy mind and body, while also inspiring Chrissy to pursue her dreams.
Today, at age 29, Chrissy has defied all the odds. Graduating from La Salle University with a BSN, RN in four years, Chrissy accomplished her dream of becoming a nurse to help others. Her husband, Rob, is also a nurse. They traveled to Chiang Mai, Thailand
to work in a special needs orphanage and teach English and science at a nearby school. Chrissy and her husband have continued to fulfill her dreams like skydiving, and most importantly, starting a family. Chrissy happily delivered a healthy baby girl,
Audrey Marie, in July 2016.
The purpose of this book is to help children suffering with chronic illnesses, like CF, rest easier at night and dream of a better tomorrow. It inspires families to believe in the power of positive energy and helps them realize that never giving up can
lead to a life of happiness, fulfillment, and endless rewards.
Kiki's Bedtime Story is available for purchase on Amazon.
Rachel JacksonSchool Nurse, Walpole High School
As a high school nurse in Walpole, Mass., I was presented with a unique situation: I had three students with CF attending the same school at the same time. As I prepared to accommodate these students, I quickly discovered there was not a clear path to
follow. I set out to pave the way. I planned for many years and wrote two posts for the CF Community Blog about my preparations. I consulted with nurses, families, and students from all over the world about my plans and the documents I created.
The staff and student body have been so wonderful with helping to keep our students with CF healthy. In fact, the film students at Walpole High School made a CF documentary for the nationally recognized Walpole High Film Festival. High schoolers Jess
Horne, Nicole Waters, and Jimmy Haskins made, "Six Feet of Separation," a documentary centered around cystic fibrosis at Walpole High School. The film follows three students who have CF, investigating their daily routines and hardships. The film
also looks into the life of the last student with CF to pass through Walpole High, and how his life compares to the those of today's students.
Through interviews with staff from the Cystic Fibrosis Foundation's Massachusetts chapter, the filmmakers discuss the hope that lies in the future for finding a cure for CF. The documentary's goal is to showcase the hidden battles faced by students in
their very own school and to encourage the public to raise awareness for the disease and to donate and fundraise to help find a cure.
Learn more about “Six Feet of Separation” from the One-Point Perspective Podcast.
Aditi KantipulyAuthor, Zebra Alphabet
All children across the globe -- whether they have a rare disease, commonly found disease, or no disease at all -- are special and we must celebrate who they are. Rare genetic conditions don't typically get a lot of attention for funding and research.
I wanted to write a book to shift this perspective. I wanted more people to care about the approximately 7,000 rare diseases, like cystic fibrosis, that collectively affect 350 million individuals worldwide.
I went back to the drawing board and asked myself, “what helps create a common understanding in a community?” I think the vehicle for that is language. People relate through language. Language allows information to flow within a community of people. That's
where the Zebra Alphabet comes in. The book uses the letters of the alphabet and illustrations to transform complex, rare diseases into recognizable and relatable images.
Even though cystic fibrosis affects a small number of people, the challenges that arise with CF, and any other rare health conditions, are universal. It's important to recognize that all of those affected by rare diseases are part of a much larger community,
because there is strength in numbers.
Learn more about the Zebra Alphabet at zebraalphabetbook.com.
Digital Project Manager, CF Foundation
Lindsay is a digital project manager for the Cystic Fibrosis Foundation, overseeing the strategy and execution of initiatives such as the first-ever BreatheCon, as well as leading ongoing enhancements of CFF.org. Currently, she is also a master’s candidate in social enterprise at American University’s School of International Service, studying business and innovation methods to create change and opportunity within purpose-driven organizations.
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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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