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 began taking prescribed medication to control my cystic fibrosis-related pain. Soon, the medication tried to control me.
November 13, 2018
Learning Not to Compare Myself to Others When Setting Goals
Navigating My Newlywed Life With CF
Having CF is painful, at least for me it is. For as long as I can remember, pain has been a daily occurrence, but I've learned to live with it. When I was a teenager and first began fully experiencing pain that could not be relieved with over-the-counter
pain medications, I was prescribed a stronger pain reliever.
I felt good! Being pain-free was so intoxicating (no pun intended). I no longer felt pain from moving, coughing, or breathing. I didn't expect for the medication to drown out my mind, but it did, and it felt good. I wasn't thinking about dying anymore. I was fine for the first time in a long time and I liked that feeling.
Soon, I was taking the medication more often than I was supposed to because, eventually, I needed more of it to continue feeling “normal.” I couldn't
think about anything else because of how the medication affected my mind. I no longer had a ticking clock in my head, constantly reminding me that I will expire sooner than everyone I knew.
I was functionally “high.” No one knew what I was doing or could tell either. It surprised me how well I could hide what I was doing, how well I acted normally. How, when I needed my pain pill, I could take it without anyone thinking anything was
wrong because it looked like I was taking an antibiotic or enzymes.
I became pretty good at hiding it. Years flew by like that. I just could not stop. I knew I had a problem, but I never really confronted it because I was ashamed that I had let myself get into that position. I was embarrassed and I did not feel like I
could tell anyone. I was alone.
One day, I finally got the courage to speak to my doctor about it. He recommended that I wean off the medication slowly because I had become dependent on it. He told me, honestly, that withdrawal is not the best experience. But, I was stubborn and didn't
listen. I went home and flushed the pills because I just wanted to be free. Within an hour, I began to experience withdrawal symptoms. I was sweating, vomiting, had horrific stomach cramps, and was restless. I was just miserable and I was like that
for several days.
I lied to my family and said that I had a bad stomach virus. I was too ashamed to tell them anything, and I carried that shame for years before I told them the truth. When I finally did tell them, reality was the opposite from what I imagined. They supported
me 100 percent. I was scared for nothing.
Having CF, and everything it comes with, means pain, that includes bronchiectasis, arthritis, joint pains, fibromyalgia, abdominal cramps, cracked ribs from coughing too much, medication side effects, and surgeries. The list is long, and -- like many
other CFers -- pain is just a huge part of our lives.
I now have a high tolerance for pain. I monitor my pain medication, meaning I only take it when walking becomes agonizing or the pain is unbearable. I wear compression socks and I wrap my knees and ankles. I use pain patches and I soak my worn-out body
when I have to. I have found other ways to cope and I'm happy with that progress because I'm not dependent on pain pills anymore.
I wanted to speak up about it now because I'm not ashamed or scared anymore. It was a long road to get to where I am, but I made it. Pain may still be a part of my life, but it doesn't own me anymore.
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Adult with CF
Marieliz has atypical cystic fibrosis and bronchiectasis. She is a member of the patient advisory council at Presence St. Mary and Elizabeth Medical Center in Chicago, where she ensures patients receive top care and attention from medical staff. Marieliz joined the Cystic Fibrosis Foundation’s Adult Advisory Council in May 2018 and enjoys getting involved in the Foundation’s other projects as well. She currently lives in Chicago with her husband, Michael, and they share a 4-year-old adopted cat named Penelope Marie.
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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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