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.
How do you define passion? For me, it's simple. It's the things that I enjoy, the things that I love and the things that I want to do continuously. However, trying to figure out what those things are is not so simple.
February 9, 2016
No One Thought Less of Me for Having CF
“I Love Life”
Growing up I knew that I was different. As a child with cystic fibrosis, I did not understand the impact of the disease on my health and was determined to be treated in the same way as everyone else. I battled with my health from a very young age, and had major surgery before the age of 7. This surgery left me hospitalized from Halloween to my birthday in March. Looking back, I now understand the severity of the situation, but at the time all I thought about was how I was getting an awesome vacation, complete with room service, toys and friends and family visiting me every day.
Nevertheless, through all my health issues, my parents made sure that I tended to my studies. In my house, education was paramount and my parents stressed the importance of learning early on. Considering that my older sister was a child prodigy, my twin sister demonstrated skillful writing at a young age and my mother had three advanced degrees (she would later add two more), you can imagine the pressure that I felt to succeed. This pressure was magnified by the need to continue managing my health.
Although my sisters did not have to deal with any significant health issues like I did, I was never allowed to use it as an excuse. So I never did. I think that, in many ways, this helped shaped the attitude and work ethic that I have today.
Luckily for me, I quickly realized that technology was something that I could excel at and, more importantly, loved doing.
I attended Bowling Green State University with intentions of majoring in computer technology. However, when I got there, I learned that they had gotten rid of my major and I was at a loss. I was only a freshman, so I figured I would finish the year, complete my elective classes and transfer to another college to pursue my computer tech degree. While looking for classes that fulfilled my elective requirements, my twin sister suggested that I take a class that she was in: Nutrition 101 with Dr. Julian Wilford (aka Dr. Joe). She figured that if I hated it, at least several of our friends were in the class so that would make it worthwhile.
I went to the class with only negative expectations, but after my first class I instantly felt connected to the information, Dr. Joe's teaching style and the instant reward that
nutrition provides. I immediately called my mother and asked her, “How would you feel if I became a dietitian?” That day I found my calling; I found my passion. I went from not wanting to go to college to graduating seven years later with a Bachelor's of Science in Dietetics, and later earning a Master's in Food and Nutrition. I ultimately became a registered and licensed dietitian.
I was able to find my passion, which I now use as a platform to educate others
about cystic fibrosis and the hardships related to CF and nutrition. In addition, I pride myself on my ability to help athletes with their nutritional needs. I believe that it is my responsibility to ensure that they understand the benefits of proper nutrition on performance. Aside from athletes, I also assist individuals who struggle with allergies and co-morbidities. I also really enjoy helping other people with CF conquer their nutritional deficiencies by not only being able to relate to them in a realistic manner, but by also providing knowledge based on my personal experiences. Overall, everything I do has been inspired and influenced by making sure that people understand that their limitations are only as strong as the belief that you can't surpass them.
Adult with CF
Nick was diagnosed with cystic fibrosis at the age of 3 months. He obtained his bachelor’s and master’s degrees from Bowling Green State University and became a dietitian. He is also a poet, artist, educator and dancer. Nick focuses his life on utilizing his abilities and knowledge to influence those around him, while acting as a positive representative of the CF community.
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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.
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