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.
In a culture flooded with advertisements about the perfect body, secret weight-loss tricks and fad diets, our cultural ideals of weight are often skewed to an image that is far from healthy.
Jodi Marquez Klarenbeek
May 23, 2016
Walking the Walk: How the National Office Does Great Strides
4 Questions to Ask Before Going Into Labor
Skinny. It's one of those words that has a significance all too specific to the cystic world.
A couple months ago I was in search of a dress for a formal work event. After a big setback in November, I've been on a slow recovery back to healthy. I tried dress after dress for several weekends in a row. Each time I looked in the mirror, fighting tears for what I saw looking back at me. My arms looked like toothpicks. My eyes went directly to my carved-out collarbone. I could see my ribs emerging where my cleavage once was. With my naturally long legs and narrow hips, a short dress was completely out of the question. I felt like a 10-year-old playing dress up. As the words left my mouth, I realized how silly they must sound to others.
“I look too skinny.”
In a culture flooded with advertisements about the perfect body, secret weight-loss tricks and fad diets, our cultural ideals of weight are often skewed to an image that is far from healthy. This overwhelming presence of the ideal body is inescapable.
What the outside world doesn't understand is that my skinniness is not a choice. It is often a direct representation of my health. A drop in weight is almost always linked to an infection I'm fighting as a result of my cystic fibrosis. To add to the complexity, my
CF-related diabetes has progressed as my CF has. The conflicting regimen for the two diseases is a constant struggle. With lung infections come high-dose steroids; with steroids comes high blood sugars and a crazy appetite. With high blood sugars comes dramatic weight loss; with weight loss comes loss of energy. Loss of energy makes fighting multiple diseases and an infection unbearable. This cycle is exhausting.
While consuming more calories a day than I've ever had the attention span to count, my BMI is still well below the underweight category. When antibiotics make me feel sick, when I'm too tired to eat or when I have no appetite at all, eating is still not an option -- it's a must. My
intake is strategic: high-calorie, high-fat, high-protein, low-sugar, high-nutrient, with extra vitamins and supplements, in combination with pancreatic enzymes and insulin. I am constantly calorie chasing and even so, there are days when I feel like I'm disappearing before my own eyes.
While much of the world struggles to find pants that make their behind look good, a cystic simultaneously battles the pressures of society to look normal against everyday decisions that affect the quality of his or her life. Without the right support and influences, priorities can easily be misconstrued, as young cystics don't understand the repercussions of temporarily blending in.
There is often a silent suffering that comes with chronic illness -- not because you don't trust your loved ones with these feelings, but because your natural reaction is to be strong. “You're so skinny.” “I wish I could eat whatever I want and look like that.” “Jeez, you're skin and bones.” “You're so lucky!” Although some of these comments aren't meant to be negative, they aren't equivalent to saying, “You're beautiful.” I feel like these comments are clearly said to draw attention to something that separates me from others. Consciously or subconsciously, they are a dig at my
self-esteem. If I'm being honest, my first thought isn't normally as gracious as my actual response.
Body image is an issue that isn't going anywhere. This battle will never cease for those in or out of the CF community.
I'm not seeking pity or even empathy. I'm sure this post will seem petty to some and dramatic to others. The comments won't stop, and the topic won't disappear; but this is a reminder that everyone is fighting a battle. Although much of life is a series of events that are beyond our control, every day we still have control over our actions and reactions.
When I was in middle school, my older sister gave me a large frame with a small quote in the center by Ralph Waldo Emerson: “To be yourself in a world that is constantly trying to make you into something else, is the greatest accomplishment.” I don't think the gift was for any particular reason other than the fact that my sister knew the words were something I would need.
My fight is much bigger than being skinny, and the world is so much bigger than body image. At the end of the day, I choose to love. To love others and to love myself, to always give the outside world the benefit of the doubt and to combat ignorance with awareness.
Jodi Marquez Klarenbeek
Adult with CF
Jodi is a young adult with cystic fibrosis living in Oklahoma City. Originally from Iowa, she was diagnosed at 14 months of age and has fought cystic fibrosis her entire life. Her journey with CF has driven her passion for cystic fibrosis awareness, her work as a CF advocate and her participation in CF research studies. Through her writing, she hopes to give a voice to people in the community who have not yet found one. When she is not writing, Jodi enjoys working, salsa dancing, yoga and spending time with family and her husband.
Share this Post
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.
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