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.
Being a mom is a tough job; being a CF mom is an even tougher job. But, finding ways to stay organized and maintain a routine has made it a bit easier.
June 20, 2018
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When my daughter, Shiloh, was diagnosed with cystic fibrosis almost two years ago, I really struggled with keeping up a routine and getting all her new treatments, medications, and medical equipment cleaned and prepped. This caused me to miss some of her treatments (which I would NEVER condone, but a new diagnosis and depression add up quickly) and made our lives even harder.
One thing that has made this journey easier is organization. In fact, I now have CF stations set up in the kitchen and where Shiloh does her treatments.
Although we've always kept most of her medications in the kitchen, I used to struggle with the storage and ease-of-access to her medications. Then, I found clear containers made for tools and crafts that fit her daily needs perfectly.
The containers are divided into groups: daily meds, syringes, probiotics, toothbrushes (which is a whole other article), and extra nebulizers. Having everything visible makes her daily routine streamlined and simple.
Next to Shiloh's daily medications, we have a treatment calendar. Making this addition to her medical care has been so easy and beneficial.
On the calendar, I mark down how many treatments we have done each day, future appointments, and any symptoms that may arise (i.e., fever, vomiting, tummy aches, etc.). This allows me to track any changes in her health and keep her care team updated and informed.
When she is on antibiotics, we also track when she receives her doses by making a chart directly on the bottle. This makes giving her doses easier -- especially when they're being administered by multiple parents.
Another CF station we have is her treatment cart. We have a three-tiered cart set up with her vest, compressor, medical-grade disinfecting wipes, tablet, and inhaled medications. This station helps treatments run as smoothly as they can when you have a toddler with CF.
Cystic fibrosis is a journey that you don't always want to be on. But, staying organized on the journey makes it just a little easier.
Mother of a child with CF
Brooke is the mother of her daughter, Shiloh, who was diagnosed with cystic fibrosis at 3 weeks old. She has an in-depth understanding of the impact of CF, having had previous family members diagnosed with the disease. Brooke attended Boise State University, and is able to stay home to raise Shiloh with her husband, Ross. They currently reside with her parents in Clovis, Calif., and are active members of the Southern California Chapter in Los Angeles. You can contact Brooke at firstname.lastname@example.org or follow her family's journey on Instagram.
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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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