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 struggle to cope with my CF brought me to some dark places. The support of my care team helped me come to the light.
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Growing up is scary, embarrassing, complicated and emotionally draining. Add cystic fibrosis into the mix and it stirs up a whole new recipe for psychological discord. Being a teenager with CF is isolating. I was subject to the same mood swings as any other 16-year-old, but mine were often about
making time for treatments, remembering medications and trying not to have a coughing fit in front of my peers. Eventually, my mood swings and inability to feel understood prompted me to drop out of high school and venture down a path of addiction.
As someone who never met anyone else with CF in person, I turned to online forums to better understand my issues. Finding information on
airway clearance was easy, but finding information on overcoming temptation was another untold story. Around age 16, I started smoking marijuana every day, and by 17 I had experience with prescription pills, psychedelics, stimulants and just about anything else I could get my hands on. I knew I couldn't have been the only rebellious patient, and my inability to find others within the community with similar issues became frustrating. At a
routine check-up in September 2013, my lung function had dropped 30 percent and I had lost more than 20 pounds. Until then, I was able to hide much of my life from
my care team, but the consequences of my actions finally caught up with me and I was admitted to the hospital for two weeks to treat infections.
Initially, I was angry and ashamed. Seeing my blood test results, the first thing my doctor commented on was all of the THC (the intoxicant in marijuana) in my system. On top of that, the nurses kept noticing and asking me about my self-harm scars. All of my secrets were exposed, and I had never felt like a bigger disappointment. I was on intravenous fluids, oral medications and nebulized treatments every four hours. My sense of self was stripped away to reveal a scared 17-year-old who knew she had to take better care of herself or she would die.
Watching the care team dedicate their days to my well-being catapulted me toward a huge spiritual awakening. Never in my life had I been surrounded by a group of people so unconditionally caring and supportive. Despite my stubborn behavior, the team came together without judgment to provide me with the utmost care. This struck a chord in my heart and slowly my emotional baggage began to lighten.
I met with a child psychologist, which allowed me to address some CF-related fears, and I learned a lot about my
emotional health. Before that, I never properly addressed my fears. How do you find the words to express your fear of dying? Your fear of not getting to live as long as your peers? Your fear of not meeting personal milestones like college graduation, traveling to exciting destinations or marrying?
My inability to open up within the community led me down a destructive path of resentment, anger and insecurity. In hindsight, I was just a girl trying to stuff as many experiences as possible, good or bad, into what I perceived might be a short life.
Luckily, my hospital stay enabled me to dive deeper into myself, admit my fears, live my truth and uncover the beautiful woman who exists beyond the CF.
By the end of my visit, my lung function, weight and overall health had skyrocketed. My desire to love myself overcame my desire to escape. I vowed to put my health and well-being above all else, including momentary temptations driven by fear.
I am now a healthy young adult in college with a lung function of 70 percent. I eat like there is no tomorrow, practice yoga and strive for enlightenment. The idea of doing drugs makes me sick to my stomach, and I do not condone their use. I do, however, condone talking about it.
Opening up discussions within the CF community about fears, temptations and urges allows us to ditch the journey toward shame and move toward emotional well-being.
I am incredibly honored to have had such a profound journey, and I can't wait to see where my love for life takes me next. For the rebellious people with CF who are struggling with addressing fears and finding peace, I dedicate my words to you. May we all have the courage to confront our fears within the community and share our experiences doing so, for this disease is not just an excuse to be strong for ourselves, but for others as well.
Young adult with CF
Sydney is a young adult who was diagnosed with cystic fibrosis at birth. She is currently pursuing a bachelor's degree in English at Florida Atlantic University and aspires to be a writer and motivational speaker. In her spare time, Sydney enjoys studying astrology, practicing yoga, and projecting peace and love outward. Sydney can be found and contacted via Facebook.
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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.
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