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 can't say I was happy to get this diagnosis, but I was definitely relieved to have answers. At least I knew who I was in the ring with.
May 2, 2019
My Three Rules for Dating With CF
Why We Need to Stop Repressing Our Emotions
Cystic fibrosis is a brutal, bring you to your knees, knock your lights out kind of disease. It is literally a fight for your life. Every time you think you have made it to the next round, the bells rings and BAM! There you are again, standing on the canvas ready to push through the pain and stand up and fight.
But, what if you didn't know your opponent was CF? What if every time the bell rang you were standing in the middle of the ring shadow boxing, throwing punches in the air, trying to stay focused on an invisible, elusive enemy that was always just out of reach? That is the battle I fought for 47 years until the opponent took shape and revealed itself.
Everyone with CF has a unique perspective with varying degrees of the disease. That is, everyone gets in the ring and goes 12 rounds, but everyone's battle is different. Most of my life, I did not know what was wrong with my body. Why was I so sick, and why couldn't I get well? Every time CF knocked me down, and I would hear the referee's count, I still got up and took more punches because I needed to stay in the fight to find answers.
I didn't always spring to my feet, and many times I was left bruised and beaten. But, I always made the choice to get up. As a result, during the next round, I was smarter and stronger, mentally and physically. I learned it was beneficial to fall. Each time I fell, new challenges arose, and I was pushed to find new ways to get up, adjust, and adapt to my new surroundings. I didn't know what I was fighting, but one thing was certain: I knew who I was, and I was not going to throw in the towel. I was going to fight.
“One step at a time. One punch at a time. One round at a time.” (Creed, 2015)
My battle began when, as a baby, I had chronic pneumonia that was treated aggressively with multiple antibiotics. Then, at age 4, I fought for many months through a painful, life-threatening brain abscess and surgery. Initially paralyzed on one side of my body due to the immense pressure on my brain, I slowly regained mobility, but, I'm still without most feeling on my left side. More than 30 years later, I learned that this incident was related to my CF: The fluid in my lungs had traveled to my brain, which caused the debilitating abscess.
I didn't develop chronic CF symptoms until my early 30s after I was married and had children. I presented as a “classic” CF case with chronic cough, fevers, sinus infections, pneumonia, shortness of breath, bronchiectasis, hemoptysis, chest pain, compromised immune system, collapsed lung, low body mass index, and so on. My petite frame did not match the low, raspy voice I inherited along with a deep, wet, croupy cough I tried to unsuccessfully hide. Year after year, one infection after another added more stress to my already weakened lungs and immune system. More than 10 exhausting years of being chronically ill went by with no concrete answers. Multiple doctors tested me for CF, but the results were always negative. By now, my cultures were positive for Mycobacterium avian complex (MAC). I wondered, why I couldn't clear this Mycobacteria or any infection from my lungs?
My life was certainly not what I had envisioned for myself or my family. I struggled with guilt, embarrassment, and frustration because I could not give my family 100 percent of myself. I was running at about 30 percent on a good day. But, I had my faith and a family that needed me, so I fought on.
I had all the symptoms of CF but didn't get the tools to start treating it properly until six years ago. By then, I was testing positive for Mycobacterium abscessus (M. abscessus) and was resistant to nearly every antibiotic. I found a doctor who specialized in Mycobacteria who believed that my previous genetic tests identified less than 100 CF mutations. He, along with my CF doctor, thought my CF was a rare, milder, and harder to detect form based on all my symptoms. I took a test that identified the more than 1,700 CF genetic mutations, and he was right! I had two rare CF mutations. Finally, I had a concrete CF diagnosis and began treatment and a new fight.
”You, me, or nobody is gonna hit as hard as life. But, it ain't about how hard ya' hit. It's about how hard you can get hit and keep movin' forward. How much ya' can take and keep movin' forward.” (Rocky Balboa, 2006)
I can't say I was happy to get this diagnosis, but I was definitely relieved to have answers. At least I knew who I was in the ring with. I knew who I needed in my corner and at ringside to help me battle this disease. Any good fighter knows their strengths and weaknesses, and I needed to accept that my body had limitations. It meant that if I had a day at 60 percent, be grateful and run with it!
I had to learn a new normal. I learned to take time to sit still and lean into my faith, family, and friends. There is so much disruption and disturbance with this disease, and I needed to find peace whenever I could. I realized I may not be able to control my body, but I could try to control my mental well-being. It was imperative to rest and regroup my mind, body, and spirit to put myself on a peaceful, purposeful path. Maybe I needed to have a good cry or laugh, be mad or sad, pray, meditate, read, binge-watch a series, or call a friend -- whatever it took to redirect my mind to fill me with passion, purpose, and a positive attitude. The ultimate goal was to get back in the ring, not to stay stuck. I needed to move, even if no one else could see I was moving. I knew I was moving forward into a better place.
I learned to find joy in the little things and rejoice in small achievements, like being able to sing a song in my car and not be out of breath. After I stumbled in the dark for so long, I realized how glorious it was to bask in the light. The big things were still in front of me. It was important to still dream, have hope, and believe. Somehow, the focus shifted from what I had to who I had become and moments of gratitude filled my heart. Life is so very precious, unpredictable, and fragile. I discovered just being in the moment with my family and friends was enough.
I found that in the face of adversity, even from a very young age, I could go to the distance. I could go toe-to-toe with whatever was in front of me. I was stronger than I thought and could persevere through extraordinary obstacles. That empowered me in a very unexpected way and gave me a bigger sense of self. So, bring it on! Hit me with that body punch, but be ready for me to bob and weave and answer with a one-two combination. You may knock me down and try to tear me up, but I will get up every time. I will rise because that's what fighters do.
Join the conversation on Facebook.
Adult with CF
Kathy has a BFA and MA in theatre and loves living in her native state of Texas. In addition to sharing her journey with the CF Foundation, Kathy's story will be highlighted by NTMir as part of their 2019 Annual Campaign. A single mom to two beautiful grown “kids” who fill her life with love and purpose, Kathy is trying to discover her “new normal” now that a lifetime of PTA school volunteering and plays are in her rearview mirror. She is a loving mother, faithful friend, dedicated daughter, sister, and aunt. Kathy loves C. S. Lewis, the beach, and movies, and has a passion for the written word. She believes that words shape thoughts, thoughts ignite insight, and insight fosters compassion. You can follow Kathy's story on Facebook.
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