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 daughter's airway clearance treatment with the vest went more smoothly after we learned a few tricks.
February 22, 2016
Four Ways to Conquer First-time Insurance Issues With CF
Warren Warwick, a Pioneer in CF Care and Research
When our daughter, Annie, was
diagnosed with cystic fibrosis as a newborn, my husband and I threw ourselves into learning as much as we could about high-calorie formulas,
chest physical therapy, or CPT. CPT is a treatment that uses a handheld cup to pat on the chest, sides and back in an effort to loosen mucus in the lungs. I am sure that during those challenging first months, someone mentioned the vest (high-frequency chest wall oscillation), but in my very overwhelmed state it's hard to recall if I even brushed my hair in the morning.
During Annie's transition from crawler to walker, CPT became increasingly difficult. Her wiggling, grabbing, flipping over and, eventually, running away made it almost impossible to perform CPT effectively. That's when the lightbulb went on and I remembered the vest. At our next
clinic visit, we asked about it. Much to our relief, Annie's doctor told us it was time and she was measured for her new vest (we even got to choose the color, purple).
When the vest arrived at our home, I reviewed the materials and scheduled time for a company representative to teach me Vest 101. When the day came, I wasn't sure how Annie would react. To be honest, I wasn't sure how I would react. It's a lot to take in. Our rep was incredibly patient as we went through the steps until Annie's turn came. I sat her on my lap while we adjusted the fit. She seemed so little, and when the rep admitted this was the smallest vest she'd ever fit, I wasn't sure what to say. The rep followed with quick reassurance, “Most families I've worked with struggle with the transition to a vest. It's a good move and I know you'll be happy with it.” Again, I didn't know quite what to say as I'd questioned the most major decisions I'd ever made. All I could do is dive in with my daughter on my lap looking up at me as if to say, “What is this thing?” We connected the hoses from the compressor to her vest and I pushed the “on” button to start our session.
Houston, we have lift off.
Initially, Annie wasn't sure. The noise, the new sensation and having to sit still on Mommy's lap left her uncertain. To distract her, I patted her mouth with my hand while we sang to make funny sounds in time with the vibration. Soon, she started to giggle. The rep adjusted the settings and, like magic, Annie settled down. She wanted to do something with her hands so we sang and did finger play, and I let her “color” on the iPad. Twenty minutes went by fairly quickly and before I knew it, we were done. We clapped and cheered and celebrated when she was done. It was a victory and such a relief to know that she would be receiving the therapy she needed.
Our honeymoon period with the vest ended fairly quickly, and over the next few months, we learned a thing or two. A wiggly child and a vibrating vest bouncing off Mommy's chest do not work for obvious reasons. We resorted to using Annie's high chair, which has a tray that sits securely on a large dining room chair. Annie is much more comfortable and can enjoy playing with her toys on the tray during her treatment. We also reserve TV watching for vest time. Some of her favorites are Baby Einstein, Elmo and Thomas the Train. They captivate her and make the treatment go by faster.
Encouragement from family has been key to incorporating the vest into Annie's new routine.
Her big brother has been wonderful, sitting with Annie during her treatment and even wearing a pretend mask while she is doing her nebulizer. With her hero nearby, she is much more relaxed and willing to tolerate her treatment. Also, hugs, cheers and high fives make her feel proud when she's finished a treatment. This is a family affair.
Starting early with the vest has worked extremely well for Annie. Just like with the initial enzymes, vitamins and CPT, we have developed a routine. This is our new normal and we're taking it one day at a time.
Mother of a child with CF
Morgan is the mother of Cade, 8, and Annie, 3, who has CF. Morgan graduated from Montana State University with a bachelor’s degree in Health and Human Development. She spent many years working in the non-profit sector and is now enjoying her role as a full-time homemaker and homeschool teacher. Morgan is a state advocate for the Foundation, a member of the parent advisory council with the cystic fibrosis team at Billings Clinic, and a top fundraiser for Great Strides Billings, MT. She lives in Bozeman, MT with her children, her husband, Colby, and their two faithful dogs, Jack and Sally.
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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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