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.
A lot of people with cystic fibrosis are turned off by the thought of counseling. Finding the right counselor can make all the difference.
January 9, 2020
My Rocky Road to Lung Transplant
My Strict Schedule Gives Me Power Over My CF
I grew up when the prognosis for cystic fibrosis was not positive and the life expectancy was short. Having been diagnosed at eight weeks, I haven't known a life without it. I grew up like many with CF: lots of hospital stays, lots of IVs, lots of visitors, lots of unknowns, and lots of trial and error.
Most hospital and doctors' visits consisted of breathing tests, medication refills, blood work, and questions about how I was feeling and was more directed towards how I felt physically.
There were no support groups, no mental health counselors, no real talks about how I was feeling emotionally and mentally, and certainly no one that could even begin to understand what I was going through.
The isolation was -- and is -- very real. I have the desire to want more and to do more, but my body just refuses to do so. And it really got me thinking as to how I could help others not feel so alone with this ever-changing disease. Unfortunately for me, I had a million other things thrown at me while trying to manage this disease, such as divorced parents, a broken home, and isolation from friends. I hurt so much growing up that I made it my goal to find a way to help others -- even if it was just temporary. My desire to be a counselor started when I finally understood that I didn't have to suffer the way that I had been for so long.
I have seen drastic changes in the CF community regarding mental health issues, and they have created such great opportunities for those living with this disease. Even though great strides have been made, it's still extremely hard to find a counselor that has experience with terminal diseases or even advice as to how to go about doing so. In the search for my own counselor the struggle still remains.
My goal is to fill a niche for those like myself, so those with CF or other terminal diseases can speak openly and honestly about an illness to someone who just might truly understand. There has been great research on the benefits of counseling and how it can drastically improve a persons' life.
Counseling can improve a person's state of mind while they are going through a challenging time just by helping them feel as if they are not alone in their struggles, can count on an unbiased opinion about topics and issues, and can draw on all the skills and resources that the counselor can provide.
What others may not understand is that those who are living with terminal diseases sometimes have very dark thoughts. Unfortunately, the topic of death is such a scary subject to talk about and suicide is so taboo. I feel that what people like me sometimes need is to know others understand these scary and taboo thoughts are actually normal and manageable. What is most scary is when those thoughts take control of your mind.
Growing up with CF, I accepted death as my reality from a very young age and talking about it was just normal for me. But, there are others who simply refuse to talk about death and that does not promote safe mental health, nor does it promote the willingness to open up to others about what they truly experience and feel almost every day.
I urge other CFers to seek help. I finally found a counselor that I mesh with, who doesn't just nod their head at me, who pushes me, who calls me out, and who sees my worth, and tells me that they are proud of me for getting up in the morning and continuing this everyday battle.
Too many people think that counseling is boring, not for them, or that the counselor just sits there without providing any real feedback. When I experienced that type of situation, I decided that counselor wasn't the right one for me. I am stubborn, headstrong, and I tell it like it is. I have had to deal with the possibility of death from a young age, and I am sometimes morbid. Sometimes life sucks, but if just ONE person can understand and get it, I feel like I'm not alone in this ever-so-isolating disease.
Adult with CF
Nicki was diagnosed with cystic fibrosis at eight weeks old. She is determined, outgoing, caring driven, and passionate about life. She loves to explore and travel. A recent graduate of the University of Missouri - St. Louis with a master’s degree in mental health counseling, she is determined to help those who have terminal diseases and cancer. She is an animal lover and has two dogs and a cat. Nicki stays active in the CF community by volunteering for her local chapter and is hopeful for future developments in CF treatments and care.
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