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 have seen tremendous health gains since starting Trikafta. But control of my cystic fibrosis-related diabetes has been elusive.
June 19, 2020
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I've been blessed to have been on Trikafta™ now for six months. The positive impact on my life cannot be understated. This drug is life changing. My lung function has continued to increase, up almost 25 percent since I started taking it. Working with my care team, I have been able to stop six different medications. Before I started Trikafta, I struggled to make it four hours without an additional breathing treatment. I haven't had to do a breathing treatment in more than five months; I've just been using my daily inhalers. My energy level has been high; I'm walking six to eight miles a day now! I am able to sleep through the night without a coughing fit -- speaking of coughing, it doesn't happen every day! This has been amazing.
As I've mentioned in another blog post, I had struggled with the weight gain associated with Trikafta, but that has also leveled off and -- thanks to my compassionate and understanding CF care team -- I haven't been struggling with it as much as I was earlier.
One thing I had hoped when I started Trikafta was that it would allow for better control of my cystic fibrosis-related diabetes (CFRD). I was diagnosed with CFRD a little more than 15 years ago. My CF team caught it early and -- for years -- I was only on long-acting insulin every day. However, as the years went on, it became evident that I needed to also take insulin to cover meals and gain a tighter control of my blood glucose.
I'm going to be honest with you, CFRD -- in my opinion -- is the hardest part of CF.
Diabetes is so much work -- and no two days are the same. Because insulin is a hormone and it can be impacted by so many things -- such as stress, sleep, food, and exercise -- trying to control my CFRD has always been a struggle. I tend to be a perfectionist when it comes to managing my CF and this seems to be one thing beyond my grasp.
About four years ago, I started using a continuous glucose monitor (CGM), with the hope that if I could see how my glucose level was trending, I could correct it sooner. Although it has helped, it's still unpredictable. My endocrinologist has been helpful and encouraging and has told me that even if she followed me around every day, I likely wouldn't be able to achieve better control.
Cut to starting Trikafta. I am not sure if it is because I am absorbing macronutrients easier or because I am eating more food, but my glucose levels have had a mind of their own! I'm thankful for my CGM so I can see trends, but even the trends I am seeing don't always make sense. I know my glucose level is not uncontrollably high or else I would be losing weight -- and I gained weight since starting Trikafta.
I was hopeful that -- similar to my weight gain -- my blood sugars would level out after a few months and have a little more predictability. However, despite my best efforts, it still seems to follow no pattern.
Thankfully, with the advice of the diabetes educator at my clinic, my carb-to-insulin ratio was adjusted and I was given suggestions about how to dose my insulin when I exercise -- which I'm doing more of because of the benefits of Trikafta -- and when I take my Trikafta.
I'm thankful for all of the advice, but it's not as easy as I had hoped. I still feel like it's a guessing game. Will my glucose levels be controlled today? Will they bottom out while I sleep? Did I exercise too much today for the amount of insulin I took?
My care team has encouraged me to track my diet and exercise more closely -- and now that I'm not doing all the extra breathing treatments, I have time! Again, I'm so thankful for the benefits I have been given with Trikafta and I feel like -- as time goes on and I am able to better understand how it impacts my CFRD -- I will be able to manage it better.
Staying up to date on the latest research around Trikafta and its impact on CFRD has been helpful for me during this process. If you didn't get a chance to attend live, I recommend watching the Research Overview: CFRD webinar recording, which gave me great perspective on all the new research being conducted to better understand CFRD and the role Trikafta may play. I was also really encouraged to see that the CF community is just as interested in better understanding CFRD from a recent Community Voice survey.
For the past six months, my health has been better than it ever has been. So, despite the struggle to manage my CFRD, I'm thankful that I'm not also trying to fight infections and declining lung function at the same time.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Meagan lives in southwest Virginia. She has a master’s degree in nutrition and a doctorate in Health Promotion and Disease Prevention Research, and she is a certified health education specialist. Currently, she is an assistant professor at a regional state university. Meagan serves the CF community as a member of the Ear, Nose, and Throat (ENT) Guidelines Committee and Teen Connections, and she actively participates in research trials at her CF care center. She is obsessed with her two mastiffs, Mya and Warren, and enjoys traveling with her husband, Ches.
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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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