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.
Finding out I had COVID-19 was frightening, but much of what my brother and cystic fibrosis taught me about emotional resilience helped me get through it. This is the story of my journey surviving cystic fibrosis and COVID-19.
April 10, 2020
How I Fight Feelings of Isolation
Exceeding My Fitness Goals With Trikafta
Blue skies and energy from the sun's radiant heat nourished my body. I soaked in the rays outside my home in Lancaster, Ohio, fielding calls and messages from all over the world. People wished me well and asked about my experience with COVID-19.
As I strapped on my vest and stepped on the treadmill for a combination run and treatment, I watched Ohio's daily 2 p.m. press conference led by our governor. My feet carried me with ease. I was nervous and deeply sad when I heard the latest COVID-19 information. I calmed my mind, thinking I'd done everything right and physically isolated at home as instructed by Ohio's leaders. My husband and I even decided to sleep in separate rooms. I longed for a hug and kiss, but we decided protecting one another was more important.
Before I began taking the life-changing drug, Trikafta™, running at five mph on the treadmill was too difficult. This miracle drug elevated my lung function 26 percent in five weeks and reduced my mucus production from cups to less than a teaspoon each day. My airways remained clear and open as I ran. However, I noticed that a dry cough erupted throughout the workout and continued sporadically for the next several hours. That same dry cough woke me up at 4 a.m. This cough felt different than previous exacerbations. It was not a hacking, wheezing, or loose cough, but a simple dry cough. One or two coughs at a time, with no shortness of breath.
This intermittent dry cough continued for the next several hours. Suddenly, tiredness swept over me and I thought that my exhaustion was caused by the mental stress of the COVID-19 pandemic. My body relaxed under a mound of warm blankets and I drifted to sleep. Soon the cough woke me, and I realized I felt warm. I searched for a thermometer to take my temperature. It read 99 degrees. Thirty minutes later, it had risen to 100.4. I called my cystic fibrosis care center and explained my three symptoms: fatigue, fever, and a dry cough. My CF team has been my rock since I was diagnosed at 8 weeks old.
I drove to the hospital for testing and learned it would take three to five days to get results.
I filled the next three days with phone conversations, exercise, and Netflix. My breathing ability remained easy and I tested my FEV1 at home. There was no way I could have this deadly virus. My lung function was still high. For added precaution, I decided to do airway clearance techniques and nebulizers every four hours. It felt easy since that was my lifestyle for the last 30 years before taking the triple combo.
Four days after my first symptoms, I began expelling thick, dark, infected mucus. Really? I had just been released from mucus prison with Trikafta. I still hadn't received my test results, so I increased airway clearance and restarted Pulmozyme, which I stopped taking in February with my doctor's permission. Dark green globs of mucus, the size of quarters, poured out with ease. I knew that Trikafta was working as each glob was surrounded by a puddle of water, but infected mucus had returned with a vengeance.
After five days, my results came back: I had COVID-19.
My heart started pounding and my breathing became quick and shallow. I took a moment to regain my composure. I closed my eyes. Tears slowly traveled down my flushed cheeks. I took a deep breath. After 54 years of living with the fear of dying, Trikafta had set me free. I was not only back in mucus prison, but also mental prison. This virus had taken the lives of many innocent people. Would I be next?
I felt defeated and embarrassed. I've always taken meticulous care of myself. Yet, I still contracted the virus. Avoiding cross-infection and bacteria had become habit since my twenties. I realized I had a choice: I could react with fear or respond with determination and love for myself and others.
My next step was difficult. I called everyone that I had contact with in the previous 14 days. I had no idea when, where, or how I contracted COVID-19. I felt nervous, wondering if friends would feel angry because I might have unknowingly transmitted the virus. Suddenly, a memory from 25 years ago transformed my thinking. In 1995, my brother called me with the news that he had tested positive for HIV, the virus that causes AIDS. How difficult that must have been for him. My virus “outing” was nothing compared to what my brother experienced.
I chose honesty and transparency on social media, describing my real and raw story. My objective was to help educate others and give a face to this terrible pandemic. My goal was to affirm the “stay safe, stay home” orders. It's imperative that we take these warnings seriously. Protecting strangers in a store is equally as important as protecting family and friends. Protecting our valued health care workers is essential to stop the health care system from collapsing.
I knew some people faced a sudden decline after about a week and I wondered how my body would respond. Then a flashback from 1997 reframed my fear. I ended my teaching career and CF was taking over my body. I was losing hope. My beloved doctor heard of my depression and called me. She asked me to make three changes: gain 20 pounds, meditate, and exercise daily. These three suggestions became part of my daily routine. They saved me. I realized that those same suggestions were the key to fighting this virus. I had to release my worry by meditating, keep my body strong by exercising, and manage my diabetes with healthy eating and tight control.
Exercise, meditation, and healthy eating, combined with airway clearance every three to four hours, gave me courage and determination while my body overcame this viral challenge.
Within 12 days of symptom onset, my body stopped producing infected mucus. My lung function remained high. I had no shortness of breath, no fevers, no coughing, and no anxiety. I maintained daily contact with my CF team, who listened and guided me. Because reports showed that some people faced a sudden decline at seven days, my team and I decided not to use steroids to reduce the risk of masking viral symptoms.
I am deeply grateful that my body returned to baseline. I did not need antibiotics. Love and support carried me through this storm. Prayers, calls, cards, food, and grocery runs lifted my spirits. I've learned to ask and receive help over the years. My CF team and I decided that I would remain in isolation for an additional four weeks to give my body time to completely heal.
Years ago, I learned a lesson from my doctor: to stop asking “why.” With CF, those answers seldom come. Survivor's guilt tried to take hold of my thoughts. Why did I survive with ease? I reframed the question from why to what. What can I do to survive? What can I do to empower others? What can I learn from this challenge?
Much of the COVID-19 situation is out of our control. What remains in our control are our actions and our attitude.
While living with cystic fibrosis, may we choose courage and call upon our inner strength. May we use this time of quarantine to replenish our minds, bodies, and spirits. We can choose to stay home. We can choose to protect ourselves and others. We can choose to reach out to others safely. We can choose compliance with the CF tools and treatments in our arsenals.
As theologian, John Wesley writes,
“Do all the good you can,
By all the means you can,
In all the ways you can,
In all the places you can,
At all the times you can,
To all the people you can,
As long as ever you can.”
I can offer love and listening to my CF brothers, sisters, and families. Feel free to reach out through Facebook Messenger. Together we can. This too shall pass.
Adult with CF
Robyn was diagnosed with cystic fibrosis at eight weeks old. Now 54, she enjoys her home in Ohio, surrounded by wooded trails and large rock formations. Having retired from teaching elementary school due to CF complications, Robyn's passions are social
justice work, helping her father who had Parkinson's disease, riding her Can-Am Spyder, and connecting with open-minded people. With the help of Trikafta, her bucket list is growing with new opportunities. She looks forward to sharing this new life
with her husband of 31 years, Mike, and daughter, Summer, 27. Find Robyn at firstname.lastname@example.org and on https://www.facebook.com/robyn.petras.
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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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