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.
Cystic fibrosis has been a challenge to me, but I've been able to blossom nevertheless.
November 19, 2019
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Imagine you are walking by a beautiful garden. The flowers are well kept, the colors are jumping out at you, the aroma is dancing around your senses, and the roses are so romantic you start to feel like you are in a fairy tale. But there's one thing you
don't notice -- their thorns. Then you start to wonder, how can roses survive in such a chaotic and dangerous environment? Well that's what having cystic fibrosis is like.
When I was born, my family knew something wasn't right. My mother, a nurse, realized I had been sweating in my sleep and mentioned it to the doctor. After various tests, it was a sudden lightbulb moment and voila! After a sweat test,
I received the diagnosis at 6 months old.
In 1994, there was no research, much less hope for children born with CF in a third world country. I am proud to have been born in the breathtaking Andes mountain range in Colombia, South America, but it was very lucky that my stepfather met my mother,
and we were blessed with the opportunity to migrate to the United States in search of a cure. My mother packed up the very little we had, as many immigrants do, and we left our entire family -- consisting of twenty plus members -- and journeyed to
a world unknown.
My childhood with CF was joyful. I was like any other child -- playing outside, going to gymnastics class, playing soccer -- you name it. My family was aware of the precautions they needed to take with a child with CF, but they never allowed it to hold
me back from doing the things I loved to do, but most importantly, attending school.
Life with CF was the only one I knew; therefore, it didn't bother me. I learned through my disease that I wanted to educate others about it for it was still somewhat unknown. I was the only child in my school with CF, which helped me avoid cross-infection,
and I would write reports and projects about my disease in elementary and middle school. In high school, I raised money through bake sales, donating to the CF Foundation, and in 2015 I was in the Miss New Jersey Pageant and spoke about CF as my platform.
I had found a way to raise awareness which I've continued into adulthood.
Through all these experiences, the quote that I view as a double-edged sword is, “I didn't know you had CF! I wouldn't even be able to tell!” That's the trickery of CF -- it is an invisible disease … until it's not.
I have not mastered CF, for it is a continuous battle that seems impossible to beat. But there are “cheat codes” to this battle, and I want to share them with you:
I always explain to others, “It's like my body is fighting against itself,” and as sad as that may be, it's also quite beautiful that my lungs genuinely want to keep blooming. I strive everyday to represent myself not only as a CF patient but, more like
a rose -- growing among the sharp thorns; staying strong but remaining delicate.
Adult with CF
Gina Alejandra is an adult enjoying every breath -- despite having Burkholderia cepacia and cystic fibrosis-related diabetes. She is a proud graduate of Montclair State University with a bachelor’s degree in early childhood education. Gina currently resides in New Jersey with her family and two pets, Sophia and Moon. Gina plans to continue raising awareness of CF through social media. Follow her moves on Instagram! @ginaladiva.
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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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