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.
My desire to help others with CF learn how to
eat well led me to make a hard personal decision -- one that continues to pay
March 9, 2016
It's Possible to Find Hope Amidst the Loneliness and Isolation of CF
It's Not Easy to Confront the Emotional Toll of Living with CF
I have always been a "foodie." Living with cystic fibrosis
means that my life basically revolves around food (and enzymes)
anyway. So when I realized I could take my passion for food and combine it
with my passion for staying healthy with CF, I jumped at the
If you have CF or someone you love has CF, then you
probably know that the Registered Dietitian Nutritionist (RDN) is a
very important member of the
CF care team. It is the RDN's job to understand CF
patients' dietary needs and concerns while empowering them to eat well to
It's hard dealing with a chronic, invisible illness, so
I'm here to share with you just a few of the lessons that I have learned
on my journey to becoming an RDN.
I've never let CF stand in the way of living a normal life; however, I
can recall many times in college
where I pushed myself to the point of complete and total exhaustion. My strong
work ethic started to affect my health because I was pushing myself too
hard. I was so determined not to let CF stand in the way of a normal life
that I had yet to realize that I was the one standing in
the way of myself by not taking care of my body. I had to learn that
it was OK to take a break and rest so I can be my best self.
Yes, a person with CF should eat a high-calorie,
high fat, high protein diet. But does this mean that you need to eat
cookies and brownies all day, every day? No, of course not. It is
important to add
whole grains, fruits, vegetables and dairy to your diet.
the years, I've learned how to healthfully add calories to the healthy
foods I love, as well as eat my favorite desserts in moderation. Talk
to your RDN about healthy ways to add calories to your meals and
snacks, and don't forget your enzymes! Also, coupling a healthy
diet with regular
exercise on a weekly basis keeps my lungs strong -- not to mention, it
makes me feel good!
Two years ago, I started to lose weight rather than gain
it. Every CF clinic visit, I had somehow lost a few more pounds.
Eventually, my dietitian told me that if I did not start gaining weight,
we would need to start talking about the possibility of a feeding
As someone who was studying how to eat right,
I had always seen a feeding tube as a symbol of failure. I told
myself that if I couldn't gain weight, then I was a
After graduating college with my bachelor's
degree, I spent the entire summer doing my best to gain weight. I was
determined not to disappoint myself.
Coincidentally, I was
also taking a graduate class online about the use of feeding tubes.
During that class, I was given the opportunity to reach out to the
CF community for one of my assignments. I wanted to know more
about how people with CF feel about their own feeding
I read testimonial after testimonial. Not one
person expressed regret about getting a feeding tube. After
completing the class, I realized that maybe it wouldn't be the end
of the world if I had to get one.
On my next clinic visit,
I went in with an open mind. Much to my chagrin, I had lost
two more pounds -- after doing everything I could to gain
weight. I was frustrated and disappointed, but I knew what I
had to do.
After talking with my doctor and my RDN, it
was settled -- a feeding tube was on the horizon for me. Six
months later, I had gained 15 pounds and weighed more than I
had ever weighed in my life! I have now become a walking
The most important
thing I have learned is that having
a feeding tube does not mean that I have failed. It has only made me
stronger as I continue to fight off this disease and the challenges it
presents me with each day.
The journey to becoming an RDN is one of
the hardest roads I have ever had to take, but it has also been the most
rewarding. I have learned so much about myself, my body and this disease.
It has also allowed me to pursue my passion for helping others.
I hope that one day, thanks to advances in technology, I can work
remotely with other people with CF to improve their quality of life by
helping them make healthy decisions. Until then, I'm learning to make
healthy decisions for myself.
Adult with CF
Jordan is a graduate of Texas Tech University who now practices as a registered dietitian. She works part-time at a local hospital, teaches the health sciences program at a small high school, and owns her own private practice, Joyfully Eating. Jordan enjoys cooking, reading, writing, spending time with her family, and traveling. She is determined to keep finding new ways to successfully manage her disease so she can live a long life with her family. Jordan lives in Lubbock, Texas, with her husband, Jason, and their two dogs, Meredith and Leia. You can follow Jordan’s blog here or find her on Facebook and Instagram.
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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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