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 spent 2020 in COVID-19 quarantine and in the hospital separated from my family while waiting for transplant. I'm very grateful that the call came and I have new lungs -- and a new life.
Lauren Molasky Fierst
March 4, 2021
Advice for New Parents of a Child With CF
My Experience Getting the COVID-19 Vaccine
A lot can happen in a year. Babies are born, people marry. A loved one can pass on. You can be happy and sad, frustrated, and glad. You can lose your mind a little bit and find yourself all over again. Life can seem cruel one day and the next like a remarkable gift. The disaster of 2020 was both inexplicably awful and quite literally breathtakingly beautiful for me. I fought my way out of a grave so deep that I still sometimes don't believe that what I am now able to feel is real.
This time last year I was dying. Wearing supplemental oxygen every second of every day, I was dragging an oxygen tank around my house while still trying to function as a person, as well as my most cherished and important role -- a mom. In the span of a few months I had traversed from functioning sans oxygen to relying on it full time. My nine- and 12-year-old children watched as their mom declined more and more each day -- weak and struggling to breathe -- barely able to walk from room to room yet determined to fulfill the domestic duties I imposed upon myself.
I never wanted the reality and progressiveness of cystic fibrosis to halt the part of my life I loved and held tightly to, yet -- everywhere I went and looked -- I was reminded that I was now at a severe disadvantage.
My disease was front and center, making its messy presence felt in every single thing I did. Tubes tethered me to walls and machinery, and rows of pill bottles lined my counters and cluttered my mind.
Every day I fought a battle to survive, yet I was up against an opponent whose size and strength was daunting, destructive, and unrelenting, yet I refused to let my guard down and admit defeat. I knew I had to hold on and fight my hardest to reach my goal of a double lung transplant, which would be the hardest yet most rewarding adventure I'd ever dare to take. However, my life reached a crescendo that nothing could have prepared me for.
Like everyone else, I was blindsided when SARS-CoV-2, the virus that causes COVID-19, took down the world. I went into absolute isolation with my husband and children and -- for months -- we quarantined, not seeing a single other person, hoping and praying my call for a double-lung transplant would come sooner rather than later. By that time, I had been on the transplant waitlist for six months, and life was incredibly challenging. While I was suffering immensely, I still relished the ability to spend so much quality time with my family.
The groundhog days of quarantine life were uneventful until one day when I felt the distinguishable pain of a collapsed lung. A few hours and an X-ray later confirmed my suspicion, and my doctor instructed me to go to the hospital. I was heartbroken as I looked into the eyes of my children, once again forced to leave them. If had known then just what truly lay ahead of me, I'm not sure I would have been able to go. That was the beginning of my never-ending pneumothorax and the harbinger to a completely unrecognizable life. It was the start of 123 consecutive days in the hospital. My pneumothorax wouldn't heal and my doctors were hesitant to intervene too much due to the problems it could create for transplant, and so I had no choice but to wait in the hospital, trying to balance my fragile and deteriorating health without letting my culmination of ailments send me plummeting to the intensive care unit.
Grateful my husband was allowed to stay with me but separated from my children, we would have brief, hour-long visits with them. Due to hospital COVID-19 regulations, our visits were segregated to the outside courtyard and our time was up almost as soon as it began.
My heart shattered a little more each time our visits were over, and visions of my children walking away will haunt me forever.
I hung pictures and twinkle lights in my room to make it feel like home. Embroidery and Game of Thrones distracted me. Nurses became like family. I wrote and read and always highlighted my days with what I was grateful for -- even something as small as good pancakes from the hospital cafeteria. I aimed to stay optimistic, believing that a positive mental state is just as important as the physical demands of staying strong entering into transplant. I let the phrase, “what's meant to be, will be,” guide me.
I was very isolated within my four tiny walls, with all hospital staff adhering to strict guidelines and limiting as much contact with me as possible in the hopes of protecting me from COVID-19. When it was decided that my floor was to become the new COVID-19 section, the smell of fear blew across the unit.
For 108 days, I wished for the perfect set of lungs, and the next day I got my call that there was a match.
After traveling a very far distance to reach me and eight hours in the operating room, my lungs were successfully transplanted two days later, after a year on the waitlist.
Finding the words to describe how I felt leaves me overwhelmed with how much I want to say, yet words feel too small in comparison to what I feel. I only hoped to one day be breathing easily and laughing with my family, reminiscing about those dark days saying, remember when, remember when, remember when? When your zest for life outweighs your fear of death, the reward is nothing short of magical.
Three months post-transplant and I am still amazed that it happened. My recovery in the hospital was excruciating but it went as well as we could have hoped for. Thinking of my fellow CF friends who took the same steps before me -- some more than once -- carried me through those arduous times, keeping me determined to get home to my children. And exactly two weeks later, I finally walked out of the hospital smiling and breathing deeply for the first time in many years.
This past year has been a barrage of unthinkables bookended by the greatest gift one could ever receive. The bittersweet taste of such a tumultuous year lingers for what I imagine will be forever. My days no longer consist of hours of breathing treatments and struggle, and instead laughter and ease. To think that there was a time when laughing would initiate coughing so severe that I would stop breathing is something I am so thankful to no longer identify with. And as the old saying goes, I can firmly agree that laughter is indeed the best medicine.
I think of my donor and his family every day. I carry him in all that I do. Because of him and his selflessness, my kids got their mom back. My husband got his wife back. My family got their daughter, sister, aunt, cousin, and niece back. Because of him, I got my life back.
I'm excited and hopeful for the future. Life post-transplant is more than I could have ever dreamed of. I have my children, my husband, my family, and the incredible air in my lungs. I'm not always sure where I am going from here, but the one thing I do know, is that I am forever grateful.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Lauren Molasky Fierst
Mother with CF
The mother of two children, designer, fashion blogger, and cystic fibrosis warrior, Lauren recently received a double-lung transplant after more than 120 days in the hospital. Also an author, she recently published a collection of poems and illustrations,
"The Sky Cracked Open." Lauren will be the keynote speaker at the Cystic Fibrosis Foundation Gala and will receive the Breath of Life Award. Lauren has been featured in People Magazine, Brit+Co, and appeared on the Having it All podcast. She is a Las Vegas native and currently resides in Los Angeles with her husband, children, and beloved dog Charlie.
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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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