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.
When I decided to study abroad in 1974, I also decided that I would not allow CF to stop me from living my life to the fullest.
May 10, 2016
Adjusting to Life After Baby
Speaker Series: Connecting Foundation Employees to CF Community Members
I have always tried to live “above my diagnosis,” to not let my cystic fibrosis define me. How does one live above a diagnosis? I am uncertain, but I think it has to do with courage, imagination, grace, help, timing, attitude, a sense of humor and irony, and love.
1969. I was 14 and my life with CF began for real that year. I had always been considered small for my age and, although I played the clarinet, I was plagued with chest colds, pain in my shoulders and rib cage, rattling breath sounds and thick sputum. That Christmas my doctor decided that I did not have severe allergies or pneumonia “lite” -- as had been thought for so many years -- and so I was hospitalized for tests.
I spent what I thought was a somewhat enchanted yet strange holiday by pretending that the oxygen tent mist I was living in was a kind of winter wonderland. The clear plastic tent walls were speckled with droplets that created a screen from my hospital bed through which I admired a small tinsel Christmas tree that appeared to be covered in illuminated sugar. This and other holiday diversions occupied my mind during rounds of tests including those for leukemia and other cancers. Eventually, one last test was performed and after several days my parents were advised of the results.
Few people had heard of CF in 1969, and the diagnosis surely must have felt like a slammed door for my mom and dad. At the time, there were no campaigns to “kiss your baby” for saltiness, no awareness to test parents who might be carriers of the rare gene. My diagnosis came during the period in which research had not made the huge breakthroughs that would eventually lead to important drug therapies. There were very few medications. Hope seemed to be the standard for families with children afflicted with the disease. To fear this thing that doctors could not exactly identify and certainly could not heal registered heavily with my parents. Family lore had it that my mother's only sister laid on her bed and coughed to death in 1931. She was 20. My doctors explained to my parents that if I were lucky I should survive to the age of 19.
I not only lived to be 19, in 1974 I committed myself to envisioning a big future. I went to college in Rome in '75, which changed my life forever.
Even with CF, even with CF, I would repeat to myself, everything seemed possible!
The world was large and beautiful and varied and I loved it. The freedom that I felt was instinctual and inspiring. I could do this! I would not fear!
I traveled each Thursday afternoon once Italian classes had concluded for the week. I would roll up and pack the three chest x-rays I was instructed to have with me at all times, a clunky DeVilbiss 35B nebulizer, saline packets and glass vials of Mucomyst (a medication that smelled like rotten eggs, the standard and only drug that I used) in my backpack and haul it with me out of Rome. My CF kit, as I called it, was never out of my sight while on adventures through Italy and beyond.
I obeyed my nebulizer routine to a T. To the degree that my health and, therefore, my respiratory safety, depended upon regular treatments, I boiled tap water on a hot plate or in an electric teapot to sterilize the nebulizer's components. Traveling from country to country, where electricity currents changed and the configurations of outlet plugs differed wildly, I brought a wardrobe of AC/DC adaptors as if they were language translators. I packed my own clean towels so that there was no cross-contamination with my equipment. Like all CF patients today who are experts at their care and can operate the vest, and give themselves intravenous (IV) antibiotics through portacaths and PICC lines, 41 years ago the one tool -- my “machine,” as I called it -- was all that I could rely on.
But I was excited. Yes, I was sick a good bit of the time. But I felt that if I lived to the best of my instincts and followed the health regimens laid out for me, that if I dreamed large and imagined what I could do and be in this world and not be wholly defined as a “sick girl” then somehow I would not be.
Certainly, hospitalizations continued in the decades that followed. I had countless procedures, infinite IVs and new threats while hospitalized, such as pseudomonas and MRSA. But then, astonishingly -- which I admit to with true humility -- when I considered that I lived to be 19, then 29, 39 and now 60 years old, I came to understand something beautiful: that, although I could never had done it alone, my life had always been lived above the diagnosis.
Adult with CF
Born in Missouri and raised in Texas, Luanne was diagnosed with cystic fibrosis at the age of 14. She underwent a successful double-lung transplant in 2011. She has two graduate degrees, including a Ph.D. in Art History. Luanne credits her continued wellbeing to her husband Daniel, family, close friends and CF caretakers and physicians in both Scotland and the United States.
Share this Post
This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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