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.
They say it takes a village, and this is especially true when you are a single mother of two who also happens to have cystic fibrosis. Single parenthood as a person with CF can be crazy, but being okay with asking for help can make it easier.
August 11, 2016
Finding Truth and Facing It: My Late CF Diagnosis
5 Things Every College Freshman With CF Must Do
Parenthood can be hard; being a single parent is an extra challenge. Add cystic fibrosis into the mix, and parenthood becomes all that more interesting. This is my reality: I am a single mother of two who also happens to have CF.
No, it's not an easy life. However, it isn't a life that I would trade either. I have to balance my 7-year-old daughter's social needs, my 3-year-old son's temper tantrums and my health care routine. Although life can get a bit chaotic, the moments when my kids say, “Mommy, I love you,” make it all worthwhile.
How do I make it work? Despite being a single mom, I have a good support system that helps make life a little easier. My sister lives with me, and my friends babysit when they can. When I'm feeling especially sick or overwhelmed, my mother will come to stay with me and my daughter helps out with chores around the house. I also have a fairly good relationship with my ex-husband and his partner to co-parent our children. I do not do it all by myself.
Although I can acknowledge this now, it hasn't always been easy for me to admit that I can't do everything alone. I am the kind of person who wants to stubbornly do everything on my own, and I've had to learn how to ask for help. Certainly right after my separation from my ex-husband, I felt like a failure if I couldn't do it alone. However, I quickly learned how unrealistic that aspiration could be; it was just too hard to do it all by myself. Although it was difficult to ask for help at first, it became easier with practice. It has been my saving grace for my sanity and my health -- and you know what? I'm okay with that.
Cystic fibrosis is a crazy, unpredictable disease, so it's essential for me to have a good support group to help out when I'm too sick to parent independently. I've learned that you can be a good parent to your kids but also have back-up when you need it. There's nothing wrong with calling on your friends, family or community for help. That doesn't make you a failure. Rather, it means that you're doing your best, and being healthy enables you to be the best parent you can be. No matter how much you may want to do it on your own, asking a friend to babysit so that you can take a nap or putting on a movie to distract your kids in order to fit in a treatment can help you parent to the best of your abilities.
If you're a single parent too, I want to encourage you by saying that it is possible. Single parenthood as a person with CF is crazy, but being okay with asking for help can make it easier.
Adult with CF
Anna has a Bachelor of Science degree in Patient Advocacy. She also volunteers her time at National Jewish Health as the chair of the Patient Advisory Council and as the patient representative for the CF Quality Improvement Team. She also participates in the Foundation's Community Voice. When she isn't spending her time at National Jewish or the CF Foundation, she's drinking coffee, building relationships, and spending time with her two kids, Lily and Liam.
Share this Post
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.
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