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.
Our dream for our daughter, Eden, is the same one that parents have for their kids who don't have cystic fibrosis. We want her to be happy and realize her true potential.
December 20, 2018
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“There's a 25 percent chance your baby will have cystic fibrosis,” the doctor told us.
To the medical professionals, the discussion that followed was all about percentages and our “options;” but to us, the news was purposeful. It was not coincidence but divine: Out of thousands of our reproductive cells, two would join, carrying this specific gene.
This is our dream for our daughter -- that she comes to know she was created purposefully, that she is a divine masterpiece. Everyone's life has some kind of plot twist. It makes for a good story. And our daughter, Eden, has a great story. CF is just a part of it.
Help make even more dreams possible for people with cystic fibrosis by making a gift today.
Another critical element of a great story is character development. And boy, have my husband and I been developed! More importantly, we have watched Eden rise to each new challenge. We watched her as a 2-week-old try out her new “steam engine” (nebulizer) and get a chest massage from her respiratory therapist. As a 1-year-old, she “taught” her teddy bear how to properly breathe through the nebulizer. Now, Daddy and I try to choke down two of our own vitamins at the same time because our 2-year-old can swallow five pills at once.
It is amazing to see how much research and new medications have progressed, even since we entered this fight two years ago. Eden started taking lumacaftor/ivacaftor (Orkambi®) shortly after it was approved for her age group, and we have seen her gastrointestinal discomfort gradually decrease. Our curious little one asks what these little packets of white powder are and ends up gulping them down with a little bit of sherbet. In the midst of these challenges, Eden is still our happy and strong toddler, and we hope that throughout the future, she only becomes stronger and happier.
When I first learned that Eden had CF, my fear was that I would watch my daughter suffer and there would be nothing I could do about it. I quickly learned that as her parents, we are her biggest advocates, supporters, and teachers. Her Daddy and I can teach her how to be brave by being brave ourselves, knowing that without fear, there is no bravery.
We can teach her how to handle more than she thinks she can handle, how to find humor and strength in her rigorous routine, how important it is to exercise and take time to rest, and how to love others.
Our dreams for Eden are the same as they would be if she did not have cystic fibrosis. We want her to pursue whatever she desires -- an education, a career, a family. Her plot twist right now is cystic fibrosis. Who knows what it will be in the future, but hopefully, it won't be CF.
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Mother of a child with CF
Emili grew up in rural, central Pennsylvania and attended the U.S. Air Force Academy, where she met her best friend and husband, Ryan. They were stationed in Virginia and then Italy -- the country flowing with wine and pasta. They loved adventuring all over Europe before their best and biggest adventure arrived, their daughter, Eden. Emili has a bachelor’s degree in biology and a master’s degree in professional counseling. She loves working with young children, running, reading, and playing with her chocolate lab, Charlie Brown.
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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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