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.
The physical symptoms of cystic fibrosis can be debilitating. But the emotional trauma brought on by hurtful comments, financial burdens, and anguish my loved ones have faced because of my disease has been just as painful.
April 13, 2021
My Life Before and After the Affordable Care Act
Losing My Sister to CF
How many times have you heard the phrase, “Well, you don't look sick.” While most times in my life this statement has been meant as a compliment, it sometimes felt very invalidating in terms of what I actually go through as a CF patient. There
are so many things that CFers experience that no one ever actually sees! Of the experiences nobody can see with their eyes -- for me -- many were quite traumatizing, leaving invisible scars on my psyche and heart.
Growing up with any chronic illness can cause trauma for a child. This is especially true for me and my CF.
Growing up in and out of hospitals had a profound effect on me. Being taken out of my home for often weeks at a time and being brought to a place filled with all types of unpleasantries is not only scary, but often lonely. Add in the plethora of tests,
poking, prodding, intimate questions, and lack of actual rest (the hospital is one of the worst places to try and get good rest), and you create feelings of fear and insecurity that seem to build upon themselves the longer you have to do it. Granted,
I've created strong, meaningful relationships with the people on my care team, yet the hospitalizations are still traumatic.
For instance, when I was 3 years old, a nurse broke a needle off in my leg. This resulted in a full-blown clinical phobia of needles for me. Having to constantly face this fear,
without a choice in the matter, was a terrifying, ongoing struggle for me. For other people with CF, they may face anxiety associated with pulmonary function tests. The expectation of blowing a good FEV1 is akin to a weight loss journey
where the number on the scale can make or break your day. That number can determine whether you go home to your family or not. And these are some of the easier procedures that one goes through in the course of living with CF.
Then, you have to deal with the outside world -- the social aspect of being chronically ill. Personally, school was hell for me when I was younger. In an effort to educate my peers -- with the hope
that knowledge would be empowering and comforting to others -- my mother would visit my classroom at the beginning of the school year to “educate” my peers about my condition. Despite her good intentions, this ultimately backfired. I remember feeling
even more exposed.
At least if people didn't know about my illness, I could try to hide it. Once it was out there though, I was subject to vicious ridicule, teasing, and bullying.
I've heard it all - from the general teasing and never being picked for team activities, to the more pointed bullying and torment of walking down the hall and hearing some random child yell, “Here comes the disease girl,” watching the other students part
like the Red Sea. This type of ongoing ridicule left invisible, permanent scars. These scars have carried over into so many areas of my life. At times, they have left me feeling lonely, sad, insecure, and alienated. The feelings are tough to deal
with when brought on by classmates, but I've also faced trauma from interactions with family and friends, too.
Lindsey (bottom left) with her biggest support system -- her family.
As I got older, I became more aware of how my CF affected my family. I began experiencing stress when I'd notice my parents' stress due to my illness. Ultimately, and with age, I realized that
my CF made life difficult for my family. I became more cognizant of the financial burden that my CF caused. I started to pick up on my parents' emotional distress brought on by finances and balancing
life while I was in the hospital. This especially came up whenever my sister, who also had CF, was not in the hospital at the same time as me, and how difficult this was for my parents. I became able to identify my parents' emotional toll and guilt
when I was sick or being bullied. I saw the helplessness in their eyes when they realized that none of it was in their control, and they just had to sit by, watch things unfold, and try to support me the best they could while fending off their own stress, guilt, and grief.
In turn, I often felt guilty about the effects that my CF had on my family. It also hurt to find out years into adulthood that my grandfather chose not to get close to me or my sister because, “he did not want to get attached if we were just going
I think one of the things that took the biggest toll on my mental state was having the idea constantly reinforced that I was not going to live a full life, in terms of quality or quantity. It began with my father telling people that when I was born, he
was told not to bother enrolling me in school because I'd probably die by age 8. Later, age 8 became age 13. Then there was the expectation that I would not live past 18. This type of information -- reinforced by people around me, literature, and
the experience of other CF families -- has been a very disturbing thing to have rolling around in my head for my entire life. Not only is the thought, itself, terrifying, but it changes one's plans for the future, or lack thereof. Ultimately, the
thought that I may not live a long life, changed the way I see the entire world.
Fear, frustration, anxiety, loneliness, grief, guilt, isolation, alienation, bullying, anger, hurt, lack of self-confidence, insecurity, body image issues, sadness, home sickness, unsureness, lack of stability, fear of the loss of friends and family with
and without CF are all unseen struggles that most people never realize that I'm fighting with along with the physical symptoms of CF.
The unseen traumas caused by CF changed who I am. For anyone else in a similar situation, it is up to each individual to decide if that change will be for better or worse.
I have struggled, and still do, with all of those unseen traumas and more. However, I have gotten through it all with the love and support of my family and true friends! I'm hoping that this reaches those of you out there with the message that you are not alone!
From trauma can come great growth, strength, bravery, wisdom, and resilience, and nothing is ever set in stone. Breathe easy, friends.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Lindsey is a daughter, wife, and mother living with CF. She was diagnosed at 7 weeks old after her mother noticed she was failing to thrive. After a successful career as a certified pharmacy technician, Lindsey and her husband Jake welcomed their amazing miracle son, Logan. They all reside together in Parker, CO and enjoy weekly family movie nights. Lindsey, Jake, and Logan are blessed to also have Lindsey’s mother Robin living with them along with dogs Hefley and Maybe, and cat, Magnus.
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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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