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.
Although I didn't have cystic fibrosis-related diabetes, I avoided dealing with my blood sugars. Now that I do, I feel stronger physically and emotionally.
November 25, 2019
Creating a Smooth Transition to Transplant Clinic
Running Outside Saved My Lung Health and Improved My Well Being
On September 21, 2019, I had the joy and privilege of facilitating a breakout session at BreatheCon on cystic fibrosis-related diabetes (CFRD). I had been looking forward to talking with others about their experiences with CFRD and sharing my own journey,
but my expectations for the conversation were dramatically exceeded. Not only was it a packed virtual room, but the conversation could have gone on for hours. There was a stunning level of commonality among the group.
Most striking to me was how many of us live in a confused, quasi-diabetic state -- not quite diabetic by CFRD standards but struggling with blood sugars that swing wildly with limited tools, information, and well-informed specialists to help us deal with
this part of our health. Also common among the group was a sense of fear and frustration: CF already consumes so much of our daily lives. Do we really need to add blood sugar management on top of it all?
The answer in my case, after two decades of periodic high blood sugar readings, sweaty and shaky lows, and a hemoglobin A1c that had crept up slowly over time, was a resounding yes. I was 33 and my husband and I had recently entered our second year of
fertility treatment, which for us, meant that we had begun in-vitro fertilization (IVF). Over the last 20 years, my diligence about checking my blood sugar with periodic finger
sticks and eating foods that (I knew) wouldn't spike my blood sugar had waxed and waned. My A1c bounced around in a fairly narrow range: not high enough to be considered diabetic, but often a little elevated. In my teens, I had annual oral glucose
tolerance tests. By my twenties, I was tired of a test that made me feel sick and always yielded the same result of blood sugar climbing pretty high after one hour, but settling back down after two. Indeterminate glycemia or impaired glucose intolerance
but not CFRD.
In the spring of 2018, something changed for me. I felt more dedicated to my health, knowing that if I were to become pregnant, a half-hearted attempt at blood sugar management would no longer cut it. After months of pricks and pokes in attempts to get
pregnant, small insulin needles no longer scared me the way they once did. I learned that although finger pricks were once the only way to check blood sugars, we now live in a world with continuous glucose monitors (CGMs) that can be worn at home
24/7, which warn patients if their blood sugars are too high or too low.
Finally, I made an appointment with an endocrinologist who works closely with the team at my CF clinic to get his read on my situation. He was reasonable, calm, supportive, and well-informed. We started slowly with
insulin, and he wrote me a prescription for a CGM. After my first couple of weeks on insulin, I noticed that my fatigue had decreased dramatically and I was no longer falling asleep on the couch watching TV at 8 pm. Armed with new tools, I was better
equipped to continue my fertility treatments -- including managing fluctuating blood sugars that accompanied my ever-changing hormone levels.
By the time I finally became pregnant with my son, I was already accustomed to monitoring my blood sugar and taking action, which was invaluable in helping me maintain very tight blood sugar control during pregnancy. My CF team grew to include a diabetes
team, and a CF clinic nutritionist who was also a certified diabetes educator. Together they supported me closely all throughout my pregnancy.
As I spoke with others during the CFRD session at BreatheCon, it saddened me to hear how few patients felt like they had the kind of support for their CFRD that I found. It
is incredibly difficult to find endocrinologists who are well versed in the nuances of CFRD, and who can come up with treatment plans that make sense for both our nutritional requirements and our blood sugar needs. I wonder how many others with indeterminate
glycemic or impaired glucose tolerance could be served by tools like continuous glucose monitors to make more informed treatment decisions before they develop full-blown CFRD.
In my experience, finally facing my CFRD head-on has meant a dramatic improvement in my energy levels, not to mention a healthier pregnancy. I was scared for many years to take on the task of dealing with my blood sugars more directly, but now that I
have the right team and treatment plan in place, I feel empowered to manage my health and I am stronger for it.
Adult with CF
Diagnosed with cystic fibrosis at four months, Megan received a Master of Public Policy degree with a certificate in health policy from Duke University after earning a BA and MA from Stanford University. Megan has spent her career working in health policy, focusing on Medicaid. In 2019, she joined the governance board of the Cystic Fibrosis Reproductive and Sexual Health Collaborative, a nationwide online collaborative committed to responding to the needs of the CF community through partnerships that pave the way for improved sexual and reproductive health resources, healthcare, and knowledge for people with CF. Megan enjoys dance, barre fitness, and yoga. She lives in Silver Spring, Maryland, with her husband, Bobby, and son, Henry.
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