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.
Although I struggled with it during my childhood, I have come to appreciate the unique and loving relationship I have with my mother.
June 27, 2019
Staying Positive After My First Hospitalization
An Emotional Reunion With My Donor’s Family
I never had a traditional nuclear family. My parents divorced shortly after I was born, and I was primarily raised by my mother and stepfather. By 13, my mother and stepfather split up, and my mother became my sole caretaker. Lucky for me, my mother was,
and is, an incredibly hardworking woman, resulting in a great amount of financial security. Unfortunately, this security was not possible without sacrifice. My mother's commitment to making sure I had what I needed materially did not allow for much
emotional bonding. Although we lived under the same roof, we led separate lives.
My mother battled being a single parent while I battled chronic illness. I coped with this challenging mother-daughter dynamic by stuffing a wedge between my illness and me. I ignored my doctors, treated my medicinal regimen as optional, engaged in substance misuse, and by the time I was 17, I had lost nearly 30 pounds and my lung function plummeted to 40 percent. With my mother unable to attend
most doctor appointments, I used her absence to my advantage by lying to her and telling her that I was doing great.
In truth, I was suffering emotionally and my health was paying the ultimate price. When I visited my pediatric CF care team, no one asked if I had emotional support. They assumed that, as a child
with a chronic illness, I must have had a pair of doting parents. I can't blame them. There is an obvious stereotype surrounding parents of children with CF. These parents are seen as loving, supportive, concerned, and involved. They donate to the
CF Foundation regularly, attend every care center appointment, orchestrate charity events, and devote their entire lives to their child's cause. Too ashamed to admit that my mother was unable to be that type of parent due to our circumstances,
I became jaded and refused to take an interest in my health.
It wasn't until I transitioned into adulthood that I felt safe enough to open up about the hardships surrounding my home life. At my adult CF care center, I was introduced to a psychologist who works with CF patients, which I had never experienced before.
My therapy sessions with her provided me with the necessary tools to cope with my circumstances and helped me realize that, even though my relationship with my mother does not mirror the “perfect” image, it is no less valid or full of love.
When I stopped expecting my mother to be like other parents, I was finally able to appreciate how her love, as unconventional as it is, actually benefited me in all the right ways. She helped me gain independence at an early age, making my transition
into adulthood incredibly easy in some ways. I discovered that -- regardless of my home life -- I am responsible for my health.
No one can do my breathing treatments for me; no one can attend my care center appointments for me; no one can endure my hospital stays for me; and no one can commit to my livelihood
in the same capacity that I have to. For this type of discipline, I only have my hardworking mother to thank.
I am my sole caretaker. I pay my health insurance, attend all care center appointments, schedule hospital stays, abide by my medical regimen, and manage my health to the best of my ability. I think my biggest accomplishment is my newfound ability to be
open about my illness, allowing myself to receive emotional support from non-family members. I now share all the nitty-gritty details with my best friends, sometimes actually laughing at the more comical parts of my illness. I also have a supportive
boyfriend whom I share every part of my life with -- from doing my breathing treatments in front of him to sharing the not-so-sexy details about my bowel movements. Funny, right?
My mother and I continue to have a complicated yet profound and loving relationship. Recently, she surprised me with tickets to see a critically acclaimed play. We got dressed up, drove an hour away, and sat in the orchestra awaiting a phenomenal event.
At intermission, we looked at each other, laughed, and simultaneously groaned, “I'm bored.” This seemingly insignificant moment made me realize that my relationship with my mother will never be perfect and conventional. We will never be the people
who have the attention span to drop our lives for a specific cause, or the people who sacrifice the importance of independence, or the people who attend every nearby charity event (especially if they fall on the same day as our psychiatry appointments).
My mother and I choose to live differently, because if our life together were perfect, we both might groan of boredom.
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Young adult with CF
Sydney is a young adult who was diagnosed with cystic fibrosis at birth. She is currently pursuing a bachelor's degree in English at Florida Atlantic University and aspires to be a writer and motivational speaker. In her spare time, Sydney enjoys studying astrology, practicing yoga, and projecting peace and love outward. Sydney can be found and contacted via Facebook.
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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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