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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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 was an IT executive who thought he had asthma. A cystic fibrosis diagnosis changed all that and left me wondering where to go from there.
May 1, 2017
Devoted to My Wife and Her Memory
My Experience With Pregnancy and CF
Imagine being told one thing for your whole life, taking medicine for the issue, being hospitalized, and missing school. Then one random day, you go to your doctor and in the course of five minutes, your life is forever changed. You hear, “You need a
lung transplant or you are going to die.”
Let me paint you a picture of what life was like. I was eight months into my new marriage, my wife was pregnant with my first child, I had been the main “breadwinner,” and I had just landed an executive information technology (IT) position with a Fortune 50 company. And now, in an instant, I had to go on disability, apply for social security, continue my health insurance coverage until I qualified for
Medicare, and went to doctor after doctor to find out why my lungs were not working the way they should.
More than 18 months passed and as the transplant surgeon described the procedure step-by-step, he paused and asked me a question that no one in my entire life had ever asked me before, “Have you ever been tested for cystic fibrosis?” My response, like most not-in-the-know patients, was, “What's that?” My entire life, I had been diagnosed with asthma. This surgeon now suggested being tested for CF “to cover all our bases.”
The next morning, bright and early, I drove over to the children's hospital. The nurses asked me if I was lost, thinking the doctor typed in the wrong age for the patient. They ran the
sweat test four times. While I was sweating like the proverbial pig, the nurses were kind enough to explain the process to me. To say I was surprised to hear that this test has been around since the 1950s and not one doctor ever tested me is an understatement.
I learned the next day that I tested positive for CF. Going in, I thought the test was another waste of my insurance company's money. I was so very, very wrong.
I now had an official diagnosis to what had been wrong with me for my entire life. I had CF. Yep, my whole life, since I was 3, I had been on asthma medications, medications that did nothing to help my overarching condition. Matter of fact, the level of prednisone that my pediatrician had me on did serious damage to my bones. At one point in my childhood, I was taking more than 12 pills twice a day.
Aside from that, I got pneumonia almost every year since elementary school. I still remember the first time I was in an oxygen tent. I was so disappointed I could not see the TV through the tent. It was cold, and worst of all, the IVs! To this day, I have such a fear of needles that I warn anyone taking my blood or giving me an IV. Did you know you can ask for numbing cream for your skin where they are putting in the IV? Yep, at heart, I am a big kid who hates needles.
So now, I am officially part of the CF community. But what does an IT executive who has worked for major media companies do with his life now that he can no longer work? How does one redefine oneself after spending half a life getting established? How does one prevent oneself from going to those “dark places” where you honestly have to struggle every second of every day asking yourself, “What am I going to do today?”
Well, first, I have to say, my life is lived through my daughter. She is my life. She is my joy. She is my everything. There is nothing, and I mean nothing, more special than the bond between a father and daughter. I want to say, that if not for this disease, my job would have made me miss many of my daughter's baby years. I believe everything happens for a reason. And if I hadn't found happiness in despair with “Daddy's little girl,” I would never have been able to change “Woe is me” to “How can I help myself?”
Adult with CF
Andy studied computer science, statistics and political science at Georgia State University. Beginning in 1989, Andy worked in the broadcasting industry for 16 years, including at Turner Broadcasting and The Weather Channel. He was diagnosed with CF while working as director of global application development and innovation at UPS. Andy's focus now is being the best father he can be for his daughter (Daddy's Girl), and writing about his lifelong journey with CF, although he did not know he had it. He is always looking for opportunities to bring more awareness to the CF community and those involved in it -- family members, friends, and people he meets.
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