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.
My son who has cystic fibrosis required extensive treatment as a toddler, which I believe had a traumatic effect on his mental health. With the help of therapy, I have helped him learn how to self-advocate and use coping strategies for his anxiety, starting when he was just 4 years old.
Adriane De Moerloose
July 17, 2020
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In recent years, mental health has become a more common component in the overall care of patients with cystic fibrosis. Reading stories from adults with CF, I learned most could recall the exact incident and age of their first negative experience, which shaped their mental health before they reached age 5.
My son had a very difficult start in life that required antibiotics every month, four treatments a day for months on end, many hospitalizations for pulmonary exacerbations, as well as tests and procedures to determine severity of reflux, significant stomach pain, and digestive issues that weren't responding to typical treatment and routine care. All of this shaped his perception of cystic fibrosis and hospitals and, in turn, negatively impacted his mental health.
By the time my son was 3 years old, I saw a dramatic, adverse change in his behavior. He was able to verbalize his thoughts and feelings and what led to this change, and I learned it all stemmed from medical trauma.
I immediately reached out to professionals inside and outside of our CF clinic to understand more of what was going on and how I could help my son. I was saddened to learn that mental health was not well addressed or screened for children with CF until they reached 12 years old.
While getting my master's degree in education, I studied the cognitive, social, and emotional development of children in depth. Significant trauma can greatly impact a child's mental health well before the age of 5, and I saw that firsthand with my own child. I constantly championed medical professionals who were treating my son and gave examples of how medical procedures harmfully impacted a child's mental health from an early age. Depending on the severity of the disease, a child with CF could experience more before the age of 5 than some kids with CF experience before they reach their teenage years.
I encountered medical professionals with varying degrees of bedside manners and advocated many times for what I thought was best for him. I wish I could say it was an easy battle, but it wasn't by any means.
Too often, I kept hearing he won't remember these moments, and he'll become less anxious and more compliant as he grows older and has a better understanding of the tests and procedures.
Addressing the mental health of a toddler is not easy since they have limited cognitive understanding of their own emotions. I searched for and interviewed countless therapists until I found someone I thought was right for my son. I decided on a therapist who worked with cognitive behavioral therapy because I like that it is based on developing coping strategies. Being an educator, I see the importance of children learning and using coping strategies from an early age.
With the help of therapy, I was able to teach my son how to self-advocate starting at age 4. I learned what prep time meant for him when it came to specific procedures and appointments coming up. He knows procedures are non-negotiable, but he has learned how to stand up for himself and effectively communicate what he needs from his CF team and other medical professionals.
He has learned how to recognize his anxiety triggers. I learned his “tells” so I could continue being his best supporter and advocate. We have come up with scenarios and game plans on how to handle anxious moments in medical circumstances. It's a constant work in process and always changing based on his age and stage, but I am proud of my son in how far he has come and what he has learned.
My son is 8 years old now. I know I can't remove cystic fibrosis from his life, but I can give him the tools he needs to cope with the challenges that come from living with this disease.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adriane De Moerloose
Mother of a child with CF
Adriane is a mother to two children, including her son, Drew, who was born with cystic fibrosis. She has a bachelor’s degree in English and a master’s degree in education. Adriane is the chair of the CF Parent Advisory Board at Nemours/AIfred I. duPont Hospital for Children, a board member for the CF Community Blog Editorial Board, president of her neighborhood homeowner’s association, and a board member for her son’s elementary home and school association. Adriane and her family reside in Pennsylvania.
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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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