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.
When my daughter was diagnosed with cystic fibrosis, our nurse looked at me and said, “Welcome to the family!” Although I wanted to punch her otoscope lights out at the time, I think I'm finally starting to understand what she meant 13 years later.
January 23, 2019
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When my daughter was diagnosed with cystic fibrosis, our nurse -- in what I suppose was an effort to find the silver-lining of chronic illness -- said, “Welcome to the family.” She went on to explain that families affected by CF are a tight-knit group, but I'd stopped listening at the words “cystic fibrosis.”
I have a family. They are supportive and wonderful and kind. I didn't want to be conjoined with strangers only because we happen to share the same crappy genetic luck. I wanted to say, “I don't want your family; I just want my child to be healthy!” I wanted to tell her she could shove that “happy family” up her bedpan.
When parents are given the diagnosis that their child has a chronic, and sometimes fatal, disease, “welcome to the family” is one of the worst things one can say, as if we'd just won a lifetime supply of bubble gum or a VIP package on a tropical cruise line.
Cystic fibrosis is not a sing-along. It's not the Mickey Mouse Club or a punch card for a theme park where guests ride the lung transplant roller coaster or pancreatic insufficiency merry-go-round. Who would want that card on their keychain? No one would join the genetic defect on chromosome number seven association or the inherited chronic disease family. Woohoo! No thank you, ma'am!
Fast-forward 13 years. Fast-forward to feeding tubes, bronchoscopies, a thousand medications, and hours of respiratory treatments every day. Fast-forward to spending sometimes 20 hours a week on the phone with insurance companies and pharmacies. Fast-forward to living life, traveling to Hawaii and the Bahamas, swimming with sea turtles, and climbing mountains. Fast-forward to soccer and swimming, surfing and Girl Scouts. Fast-forward to a healthy child.
Fast-forward to daily communication with other CF families, relying on their expertise about living with the disease that you can't get from a medical professional alone. Fast-forward to following the lives and deaths of people who you have no relation to, other than the fact that we share this disease. Fast-forward to sobbing at the computer when a girl whose spunk reminded me so much of my daughter lost her battle at only 25.
Fast-forward to this week. In the process of changing insurance companies, the lapse in coverage meant a lapse in medication. Out-of-pocket, just one of her lifesaving drugs costs $4,000. Fast-forward to a quick message to my local CF mom's group. Fast-forward to three minutes later, when seven people offered to donate their meds to my child.
Fast-forward to a community of hundreds of people, some I've never met, but who know more about me than my closest friends.
Fast-forward to grieving the losses of children and young adults who left us before the cure came. Fast-forward to the walks and fundraisers and new medications that promise hope for a long life and a cure. Fast-forward to thousands of people who know, like no one else, what it is like to breathe this life, to fight this battle, to ride this ride. These strangers and friends, I could not live without. I never wanted them. I hate what unites us. But I love them dearly. They are my family.
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Mother of a child with CF
Elise is a contributor on What the Flicka?, Scary Mommy, The Mighty and Mamalode, and has had essays featured in Los Angeles Parent Magazine, Literary Mama Magazine, and on KPFK’s radio program, Motherhood Unplugged. She currently lives in Iowa with her teenage daughter, Adelaide, who’s thriving and living life to its fullest and funniest, despite having cystic fibrosis.
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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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