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.
Having a spouse with cystic fibrosis can leave you focusing too much on their health and not your own. My weight loss journey taught me that even if it's not about him, it's not about me, either. It's about us.
February 16, 2017
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Like most couples, when my husband, Aaron, and I began dating, we learned about each other. He had a different view on life, having
been born with cystic fibrosis and living with the expectation that he wouldn't survive past second grade. Having an incurable disease without many drugs on the market, Aaron learned to fight. He's very competitive in sports but also with his health. From his
daily treatments to
participating in clinical trials, everything that Aaron does, he does in full force.
Aaron and I grew up close to each other (same schools K-12) and even ran in the same social circles in college. But, it wasn't until a year after I graduated that I had a chance to meet him. I was looking to move into the nonprofit world. He was working at the CF Foundation and I wanted to learn more. From that first meeting, the rest was history. Our life today, almost seven years later, is eat, sleep and work CF. I wouldn't have it any other way, but when so much of your focus is on your spouse's health, you can lose sight of your own.
As our life grew, so did I. Many people gain weight when they get into a comfortable relationship. But when you marry someone who consumes at least 4,000 calories each day, it is hard not to eat along with them. Aaron loves food. He likes to be creative -- he missed his calling as a chef, which made it easier to ignore the calories. One day, I realized that I had gained 30 pounds.
My wake up call came when Aaron took part in the
lumacaftor/ivacaftor (Orkambi®) trial. I realized that he was doing everything in his power to be here for his family, and here I was 30 pounds overweight and feeling crummy about life. So I decided to lose weight. Seeing his drive to better himself empowered me to do the same and become a healthier version of myself.
I'm not saying the journey hasn't had its ups and downs. I started with the usual: gym and clean eating, and even threw in some crazy diet plans. I lost 15 pounds and, for about three years, my weight would yo-yo back and forth. It wasn't until I started Weight Watchers that something clicked and my life completely changed.
I learned that you have to change the way you look at food.
Nutrition is an important part of what makes Aaron healthy. Why didn't I think of that for myself? The best advice I received was to look at how food fuels your body. The more weight I lost -- and the more invested in my health I became -- the less I craved unhealthy foods like I used to.
Through this experience it became clear that, although it's important to be there for your spouse, it's equally important to take care of yourself and not feel guilty about doing so. We are stronger together and support each other every step of the way toward our own nutrition goals -- even though they are vastly different.
Senior Project Coordinator, Cystic Fibrosis Foundation
The wife of an adult with CF, Bradi is the senior project coordinator of the field management and fundraising team at the CF Foundation. Her favorite project is the Volunteer Leadership Conference. Bradi feels no greater joy than seeing the excitement of the volunteers and staff coming together -- just like a family reunion. Bradi is native to the Metro DC area and fell in love with the area’s art and history museums. Her greatest love, other than her husband, is her two fur babies, Rusty, a Jack Russell terrier and Caesar, a German shepherd.
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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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