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.
This blog discusses suicide and suicidal ideation, and some people might find it disturbing. If you or someone you know is suicidal, please contact your physician, go to your local ER, or call the National Suicide Prevention Lifeline at 800-273-TALK (8255). The program provides free, confidential support 24/7.
As the mother of a toddler with cystic fibrosis, I found it hard to deal with the daily grind of treatments, appointments, and insurance claims on top of all other daily responsibilities. After months of suicidal thoughts, I finally reached out for help.
Kristen Lo Giudice
January 29, 2021
How I Kept My Daughter with CF Safe When My Husband Had COVID-19
How I Relieve My CF Anxiety
I am a caregiver of a child with cystic fibrosis. I spend hours on the phone fighting with insurance companies, scheduling appointments, checking in with the doctors, and calling the pharmacy to see if the medicine has come in yet. I spend even more hours administering meds and begging and pleading with my toddler to please cooperate and do her treatments. I spend nights crying, begging and pleading with God for my girl to be OK, desperately wondering what I had done in life for her to deserve to live with such a cruel and relentless disease -- one that spends its days constantly mocking you and keeping you on your toes. One that will seemingly come out of nowhere when things have been going relatively well for a while and shake it up for you. You see, I am a caregiver, and I often hear, “I don't know how you do it.” Well the truth is, that when you are a caregiver, you have no choice but to do it.
I am a caregiver, but I am also human. That means that I find myself worn down, exhausted, depressed, and dreading the thought of doing yet another treatment because I am dog tired. I feel the fear every time we have a new manifestation of disease. I feel the anxiety every time we head to clinic. I feel it even more every time we are referred to yet another specialist. I have spent much of my time living in the darkness and with the burnout that comes along with being a caregiver.
I live the desperation of wishing that just one person would understand my fears, my sorrow, and my frustration.
We all know that CF is an isolating disease. The mental aspects that I have felt as a caregiver have made me feel even more isolated, because although I know that there are restrictions in our lifestyle and what we can and cannot do, I want to feel like I belong. I desperately wish that there was someone who would share my excitement when small victories are won; someone who would understand the fear and uncertainty when you get the call that your daughter has cultured Pseudomonas and needs to start inhaling TOBI®; and someone who would understand the stress of how fitting that in on top of her other sick-plan procedures, working full time, being a wife, and being a mother to another child who deserves just as much of my attention as my CFer.
I am a caregiver, but I am also human and can only handle so much before I am ready to break. Earlier this year, before COVID-19 and all the lockdowns, I knew something was off and I made an appointment with my doctor. I filled out the depression screening exam, and I scratched out some answers to change my score. Still, I scored an 18 out of 20 on the exam, meaning I was severely depressed.
What was the answer that I changed? It was to the question about whether I ever had suicidal thoughts. I initially said, “Yes,” but out of fear of judgment and the fear that somehow my kids would be taken from me -- even though I had not once hurt them or thought about hurting them -- I changed it to, “No.” The truth is, for the past six to nine months, I had woken up every single day wishing I was dead.
I am a caregiver, a human, and one whose mental health suffers from the burden of this disease, the fear of the unknown, and the thoughts of my own experiences. I suffer from the innate fear of the diagnosis and the ultimately fatal path the disease took for two individuals with CF whom I knew before my daughter was diagnosed.
Last summer, I decided to stop bottling everything up, stop hiding my pain from the world, and finally be honest with myself about what I was feeling and how I was doing.
It was the scariest, yet most freeing experience I have ever endured. CF is a big part of our life, and it is certainly a source of stress; but for most of us, it will not be the only one. Instead, it will be a compounding factor and it will drag us down.
I am a caregiver, a human, and a woman who faced her demons and sought help. I hope that anyone who reads this and is suffering knows that they are not alone -- that there is hope, care, and help out there. It is OK for us to experience these emotions. We are human above all else. If you are experiencing any of the feelings that I was, please reach out for help and understanding; speak up and let your voice be heard and allow your heart and mind to mend.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Kristen Lo Giudice
Mother of a child with CF
Kristen is a mother of two, whose world was turned upside down with the CF diagnosis of her youngest daughter. When she is not working or caring for her kids, she enjoys coloring, swimming, and watching Science Channel.
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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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