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.
I read the blogs and stories parents write about their compliant CF kids, I hear CF adults speak about never missing a treatment or medication, and despite my best efforts, I am fighting a battle I never imagined with Betsy.
August 18, 2015
The Art of Playing with Fire
Cards For Humanity
When Betsy was diagnosed at 18 months, my job was to be consistent with her treatments until the day she would take these tasks on herself. We all know, that as our young children watch us, we are teaching by our example. So we were compliant.
And as the years passed, new treatments were added because of a positive culture, new diagnosis or research supporting new therapies. When my daughter was 6 years old, she was diagnosed with
CF-Related Diabetes (CFRD), which came with a new set of therapies and additional monitoring. But again, we forged ahead and in the back of my mind, I heard that still, small voice, reminding me that things will get easier once she is able to do these treatments on her own.
Betsy is 15 years old now. While she's managed all of her oral medications independently since childhood, I began to transition her to manage her other therapies when she was 11. She is fully capable of doing all of her treatments on her own. This includes tending to her port and daily IV therapy, managing her breathing treatments and airway clearance, monitoring her diabetes with insulin, setting up her feeding bag every night and taking the countless oral medications she needs daily. This is what I've been waiting for! She's a smart, funny, athletic kid with countless true friends. She's on the honor roll and excels in sports. What I did not count on, is her teen rebellion.
While at a Parent Teacher Organization meeting, I was biting the inside of my cheek and pinching my upper arm as I listened to other parents complain about their teens turning assignments in late, not cleaning their rooms, or not keeping track of their athletic uniforms. I wanted to scream. What I wouldn't do for Betsy to rebel like that! Instead, my child, who has always been so well versed in her treatments (I recall her calling out a nurse about improper dosing of heparin when she was 3 years old) was not just skipping treatments, she was actually resisting them.
Teenagers rebel. That's what they do. What I've learned is that anger and rebellion go hand in hand.
And she's mad. I don't blame her. CF is miserable. This makes perfect sense. The harder I push, the more she resists.
I read the blogs and stories parents write about their compliant CF kids, I hear CF adults speak about never missing a treatment or medication, and despite my best efforts, I am fighting a battle I never imagined with Betsy. If I've learned nothing else, it's to wave the white flag before I need it. For me, that meant getting the support of Betsy's team of clinicians.
I am fortunate that Betsy is part of a comprehensive care team. The same doctor who talked to me 14 years ago was ready, willing and able to step in. Her team was eager to support her. They've seen this before and have the experience and tools to work with her. By meeting her anger with compassion, her resistance with compromise and her excuses with gentle explanations, we are turning a corner.
They've taken much of the weight off of my shoulders. They send Betsy emails encouraging her. They've also reassured me that this is not uncommon and that it's not my fault.
I'll never forget what my 3-year-old said after Betsy was diagnosed. Her world was turned upside down. She was forced to sit and watch as Betsy did her treatments and I beat on her little body as part of her therapy. She said, “Mama, I'll take some of Betsy's roses, but I don't want all 65 of them." I totally get that.
Fitting the demands of CF therapies into any schedule is challenging. As children and adolescents, most patients are able to somehow juggle this with their parents' support. But when that responsibility shifts to patients who are also faced with many other new challenges, it can become an overwhelming burden. High school, sports, friends and classes are the priority now for Betsy. Finding the support needed to help manage this complicated transition is critical to her health. The easy thing would be to do nothing and hope that she finds her way. Asking for help is hard. But being in the foxhole alone is even harder.
Mother of a teen with CF
Mary is a mother to three teenage girls. She is on the Board of Directors for her local CF Foundation chapter. Mary has advocated through all media outlets on the local, regional and national levels for the Foundation and several other charities that are close to her heart. She also currently serves on the Parent Teacher Organization Board at her girls’ high school and is employed as a CF Client Advocate for the CF Services Pharmacy. Mary and her family reside in South Texas.
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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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