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 feisty, athletic nature has gotten me through two double-lung transplants. Although my active lifestyle is different than before, I have embraced brand-new competitive pursuits that have helped me develop the mental fortitude to overcome medical adversity.
July 9, 2021
Acknowledging My Trauma Has Made Me a Better Advocate
How We Dealt With Our Newborn’s CF-Related Bowel Problems
Over the 50 years that I've lived with cystic fibrosis, competition has always been a central part of my life. The obsession commenced at an early age when my parents were warned that given the severity of my disease -- I'm a double-delta F508 -- it was
imperative that I remain active. As a result, my childhood was filled with impromptu baseball or basketball games, swimming, skiing, tennis, running, and biking. Even though I was
the youngest of three siblings, I was expected to keep up. I rose to the challenge and took it one step further -- developing an extremely competitive mentality that has helped safeguard and extend my life.
The acquisition of a mischievous pony when I was 6 launched my equestrian career. I struggled with the disobedient beast for years and our habitual skirmishes instilled a sense of dogged perseverance at a young age. As I matured, I was able to redirect
that tenacity toward my true adversary -- cystic fibrosis. In addition to riding daily, I took up distance running. However, I was hindered by my petite stature (39 pounds at age 9), which was indicative of chronic failure-to-thrive and pulmonary disease. I underwent an experimental treatment where I gained 21 pounds in just six weeks -- stimulating a growth spurt and drastically improving my overall health. The following year in a Fourth of July footrace, I not only won my age
group but was the first woman as well.
Nevertheless, equestrian pursuits were my true passion and as a pre-teen I began the dangerous discipline of “eventing.” Sports-related injuries and periodic exacerbations interfered with my goals, but my desire to succeed kept driving me forward. By
the time I entered high school, I was a successful licensed riding instructor and trainer. Throughout college and graduate school, I continued to ride and compete while pursuing a
career in biological research -- but a series of unexpected life-altering events made me reevaluate my priorities. Should I remain in academia or return to my beloved athletic roots?
I resigned from my doctoral program and dove head-first back into the equestrian world. Now that I could devote myself to my passion full-time, I was much happier and experiencing a great deal of competitive success -- including being a new mom. I purchased
a lovely young stallion and within a year we made it to the national championships -- achieving a life-long ambition. Shortly afterwards, my husband and I adopted our second daughter and our family was complete.
Despite the many positives, it was becoming painfully evident that cystic fibrosis would not allow me to escape that easily. I had developed a variety of tangential health problems -- ranging from CF-related diabetes to persistent rib fractures from violent coughing -- and my pulmonary function was declining. Within two years, I was no longer capable of training at the high level that fed my soul and watered my spirit.
Reluctantly, I sold my horses and ceased riding -- an activity that had been a vital part of my identity since I was a small child. It was a devastating change.
But being an athlete is a state of mind, and I knew how integral physical activity was to safeguarding my health. With an FEV1 of only 50%, I took up running again and added rock climbing, biking, swimming, and weightlifting to my daily regimen.
Poised to compete in a sprint triathlon, I was sidelined by a nasty bout of bronchitis, which dropped my lung function yet again. While reconditioning, an incompatible medication irreversibly plunged my FEV1 to 30%, and I became fettered
to oxygen full time. I continued to exercise diligently but competitive sports were now … unrealistic.
One year later I underwent my first double-lung transplant. I attribute my rapid recovery to my athletic background and mentality. Despite combating a myriad of deadly fungal and
bacterial infections, I returned to rock climbing, hiking, and tennis after three months. However, there were several additional “bumps in the road” and within
18 months I was diagnosed with fast-moving chronic rejection. While being admitted for treatment, I noticed the ward walking record was 11 miles. Seeing a potential challenge, I woke up the next morning and walked a full marathon in my slippers while
trailing an IV pole.
It made me feel alive again, not just to break the record, but to annihilate it. I hadn't realized how much I still yearned to compete and win -- a mindset which made it impossible to quit.
Seven months later I was re-transplanted and my new life commenced. Three months post-surgery, I finished a 36-hour reenactment of the 60-mile Bataan Death March. Although distance running was unfeasible due to the transplant meds, I could still ruck
(a jogging pace with a weighted pack). I adapted to my limitations, switched sports, and began to train. Three months later I competed in the Tough Ruck -- a marathon distance carrying a 20-pound pack -- placing extremely well. I also won several
other smaller ruck races that season. It was unbelievably gratifying to rediscover my athletic identity. Without it, I had felt untethered.
The good news is that cystic fibrosis no longer directly affects my lungs. That said, the disease has definitely exacted its pound of flesh from my body and soul over the years. Although I have been forced to change my athletic focus and how I view myself,
I have always managed to find (or invent) physical ventures that help me develop the mental fortitude necessary for overcoming medical adversity. The desire to compete and win in any venue has driven me further than I ever thought possible
-- albeit with a price. Just last month my youngest daughter and I were walking out to the car, and I naturally sped up to reach the vehicle first. She turned to me with a patronizing expression and said, “Mom, not everything is a race!”
I just smiled …
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Sara was diagnosed with cystic fibrosis in 1971 when she was 3 months old. She received her bachelor’s degree from Mount Holyoke College and master’s degrees from Purdue University and the University of Rochester School of Medicine. She is also a certified
emergency medical technician. A licensed riding instructor, Kominsky trained horses and taught for decades. Over the past 30 years she has participated in numerous Great Strides events. She received double-lung transplants in 2017 and 2020. She loves
to ruck-race and write and is the author of 10 books -- three memoirs on CF and lung transplants, a five-book children’s series of equine escapades, an educational novella about a CF gymnast, and a dystopian novel. Kominsky lives in southwest Virginia
with her husband, two teenage daughters, and a carnival toy poodle. She enjoys hiking, cycling, rock climbing, gardening, training dogs, and volunteering for the Lung Transplant Foundation. Read more from Sara on her blog.
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