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 depend on the medical expertise of my cystic fibrosis care team to keep my child healthy. I depend on the complementary expertise of other moms of kids with CF to help me stay emotionally healthy.
November 27, 2018
Teaching My Kids Hard Truths About CF
Reflecting on 500 Posts on the CF Community Blog
It's due time that I give credit to the other moms of kids with cystic fibrosis that have been such an amazing resource to me in so many ways. I'd like to take a moment to share some of the countless benefits this network of women has offered me and encourage others to join.
The moms got me through the initial shock.
It was the other mothers that contacted me and were able to relate to my feelings of shock immediately after my daughter's diagnosis. I recall a fellow mom texting me early on, “I know that this is overwhelming and that you feel like crawling into a closet, curling up in a ball and crying.” She had hit the nail on the head. That was exactly how I was feeling. I felt so alone, yet, this simple text comforted me, letting me know that I wasn't the only one who felt this way, that feeling those emotions were perfectly normal, and that life would get better.
The moms have the experience.
Sure, the doctors know the medical reasons why CF affects our children, and they occasionally can give you a tip from another mom, but they don't know what it's like to live this life every day. This is where the moms come in. They have the years of hands-on experience. They know everyday life with CF. They have traveled this road longer than I have. Therefore, they are wonderful about saying, “This worked for me. Try this.” Talk to your doctor about this.” So, it's like having a behind-the-scenes pass to aspects of raising a child with CF that no doctor or book mentioned. The doctors taught me the “why,” but the moms taught me the “how.”
The moms can relate.
Only another CF mom can truly understand how being a mother of a child with cystic fibrosis feels. It's only the other moms that understand the difficulties this life entails because, let's be honest, raising a child with CF is not an easy task. It's not easy going through the treatments, the medications, the hospital stays, the constant feeling of failure, the sleepless nights quietly crying over the likelihood that you will outlive your child. This is a tough road and only those who walk it can truly understand it. The other veteran moms have been there before and can give suggestions and advice about how to emotionally deal with the challenges we face. The moms offer me a safe haven to vent all of my feelings and for me to receive the much-needed encouragement to get me through the tough times.
The moms bring the laughter and the smiles.
The truth is that -- in the midst of all the stress, tears, frustrations, and fear -- we need to laugh occasionally. Other CF moms helped me find the small joys that are very difficult to find along this CF journey. The other CF moms are wonderful about sharing memes and inside jokes that only a CF mom would get. We share the poop stories, laugh at the strange looks we get in a restaurant when we load our toddler's fries with salt, and post adorable pictures of our CFers doing treatments. We share in the joy of our children going up in weight, learning to swallow enzymes whole, and receiving new medications. Unexpectedly, I've gained rewarding relationships that have become friendships beyond CF.
Reach out to your local Cystic Fibrosis Foundation chapter. The chapter staff were the ones that originally put me in contact with other local moms. It's reassuring to have a fellow mom that is close by and they will help find one for you. I found social media options to be very informative and helpful. You'll be surprised at how differently CF issues are treated in other parts of the world. I certainly was. It opens an avenue to obtain a plethora of alternative tips and options on CF care to take into consideration.
To the veteran moms, a million thank-yous for being the strongest, most incredible support system to me and so many others. You've gotten me through the ups and the downs. You are my most valuable asset. You are priceless. You are my Cysterhood of Moms.
Join the conversation on Facebook.
Mother of a child with CF
Angela is mother to her daughter, Raelyn, who was diagnosed with cystic fibrosis at 2 weeks old. With a bachelor's degree in elementary education and passion for photography, Angela now devotes her time and efforts to volunteering for her local Cystic Fibrosis Foundation chapter. She is a member of the Northshore Great Strides committee, an advocate, fundraiser, photographer, and speaker for her local chapter. Her family serves as an ambassador family for the CF Foundation. Angela lives in Slidell, La., with Raelyn, her husband, Paul, and their dog, Delta.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails