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.
Being diagnosed with cystic fibrosis-related diabetes shortly after a lung transplant was difficult. But, working with my doctor helped me create a strategy to make it easier.
August 10, 2021
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It always baffles me that cystic fibrosis not only causes lung, digestive, sinus, and liver issues, but it also has its own form of diabetes called CFRD -- cystic fibrosis-related diabetes.
Before transplant, I was not diabetic, but I was tested annually for CFRD by taking the 2-hour glucose tolerance test. Yes, I had to drink the nasty drink. However, after prepping for a colonoscopy,
that glucose drink isn't so bad anymore. It reminds me of flat soda, which -- in comparison -- I can deal with! It wasn't until I received the gift of life in 2016 -- a double-lung transplant -- that I developed CFRD. As you can imagine, my life changed overnight. I was on the new journey of post-transplant life, now able to breathe, but also now insulin-dependent.
CFRD has a mind of its own and managing it can be tricky. The goal is to keep blood sugar (glucose) levels at (or near) normal. I do this with a combination of watching what I eat and taking insulin. I do use the carb-counting method to regulate my blood
sugar. I always log my insulin dose and the carbohydrates that I consume, and this helps me understand if I need to adjust the amount of insulin that I take. I use an app called MyFitnessPal to log food. It helps me keep track of my carbohydrate and
calorie intake and helps me maintain my weight. I definitely need to keep the weight on to help fight infections and illnesses and to keep myself healthy.
Learning to use a blood glucose monitor that requires a finger prick was quite the struggle. It hurt. I finally found a lancet that helps decrease the pain of the poking. The lancet uses vacuum technology to suck up the blood so you don't need to pierce
the skin as deeply. Since I was having difficulty maintaining my blood glucose levels, I wanted to talk to my doctor about how I can make this process a little bit more comfortable.
My endocrinologist -- my diabetes specialist -- suggested that I try a continuous glucose monitor (CGM).
I test my blood sugar more than four times a day and take more than three injections a day of insulin, so I qualified for it. I was hesitant to try it because I was over having devices connected to me. Since I was younger, I had either an IV, oxygen,
or feeding tube attached to me and the thought of having something else was a bit hard to wrap my head around. We decided that I would try it out and if I didn't like it I wouldn't commit to it.
Once I tried the CGM, I was hooked. I have been using it for almost two years and I absolutely love it.
Some of the reasons why I love my CGM:
Having a CGM has improved my quality of life by causing me less pain and allowing me to go about my life without a bunch of bruised fingers. I feel great on a daily basis since my blood sugars are under control with my CGM, and I am so grateful to have
this device and my healthy CFRD life.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Tiffany was diagnosed with cystic fibrosis at birth in 1989. She received a double-lung transplant in November 2016, and has since been recovering and enjoying her second chance at life. A California native, Tiffany enjoys makeup, anything Disney-related, Taylor Swift, and helping the CF community through her YouTube channel LUNGS4TIFF and joint Instagram account @SaltyCysters. Tiffany credits her amazing support system for helping her maintain a positive attitude throughout her struggles with CF, and is very grateful for the life she lives.
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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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