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.
I have learned that I can live a full life -- including marriage, cooking, and skeet shooting -- despite my rare/nonsense cystic fibrosis mutations. Even if love, hugs, and my sense of humor are all I have to give on some days, then I'm OK with that.
September 28, 2020
Raising an Adult (in Training)
Why I Chose to Go Back to School in Person
Navigating life as an adult with cystic fibrosis is not something I could have dreamed of. It's not something my parents dreamed of when I was diagnosed shortly after birth. They didn't even know if I would make it through the week. I did make it through
the week and -- fast forward -- it's been 41 years since my diagnosis. It's emotional to think about, given the obstacles that have been in my path.
My life has been amazing. I sang in the Vatican; I kissed the Blarney Stone; I got married and purchased a home. Despite all the amazing parts of my life, living with cystic fibrosis has caused painful and heartbreaking experiences that have left mental
and physical scars. I see those scars every day when I look in the mirror.
The amazing thing is that those scars are a reminder -- a reminder that I am stronger than my past. My path in life has been hard, but I am at peace with it and am thankful that I have had the opportunity to choose a path.
Growing up, my parents did not dwell on the “life expectancy” number. In fact, they did everything they could to encourage a normal life. They held
me to high standards with my studies. They encouraged me on the soccer field, in the swimming pool, and on the tennis court. They were supportive when I elected biology as my major in college. My dream was to eventually study medicine and work at
St. Jude Children's Research Hospital in Memphis, Tenn. I learned quickly that not all dreams become a reality.
I moved across the country for my first year of college. It was a good experience; however, CF doesn't stop at state lines. I ended up far from home and in the hospital with pancreatitis. Pancreatitis had affected me since I was a child. I maintained
great lung function but was constantly hospitalized with horrific pancreatitis flare-ups. Because of this ongoing issue, I made the decision to return home to Rhode Island. This forced me to reassess my dreams and led me to change my major and enroll
in nursing school.
Still, sickness followed me. I started to develop chronic sinus issues and toward the end of my college studies, I underwent extensive sinus surgery. I'm not sure what happened during that nearly month-long hospitalization, but it changed me; I didn't
have fight in me like I used to. I graduated with my nursing degree, but I never had the desire to enter the medical world professionally after that. I didn't realize it then, but looking back I can see that I was depressed.
About a year later I needed a change and made the decision to move to my mother's home state of Georgia. Georgia is where I found joy in life again. In retrospect, I think my depression stemmed from the feelings that I had let my family down -- I wasn't
working at St. Jude's or even as a nurse. I had to overcome those feelings to move forward.
Slowly but surely, I began to love myself for who I was. I lowered my guard and let love in. I thought I would never find someone that would want to deal with a life with CF, but then I met Jonathan. He changed everything for me -- he encouraged me and
told me that I could still have a career, even though it may not be what I had planned for myself. He's dried every tear and has been my rock. We got married in September 2015. Marriage was something I just didn't think was in the cards for me. He
has proven so much to me, but -- most of all -- that love does not have to evade those living with a chronic illness.
Even when life seems to be falling into place, there are still challenges that stem from having a chronic illness. I struggle with the anxiety that comes from dealing with hospitalizations. Woefully little is spoken about CF-related anxiety and depression
but are widespread issues that face most of us with CF. Initially, my fear of IVs plagued my psyche for years. The incredibly strong medicines left my veins scarred. Eventually,
I had a port placed after developing sepsis due to a central line. For me, my port has been a saving grace, but new anxieties continue to arise.
My husband and I had been married only about a month when I had my first pulmonary exacerbation. Together, we got through my first “married hospitalization,” but recurrent infections meant more frequent hospitalizations. A cocktail of medicines wreaked havoc on my body, and the anxiety that stems from the side effects and the sleepless nights are my new fears. Thankfully, I'm much more at ease with being up front about my fears
I've learned that not only is it OK to talk about what's scaring you or giving you anxiety, it is necessary. Speaking out is within your control.
At this point in my life, I was navigating a new life with frequent lung infections but also a new life as a married woman. Inevitably, Jonathan and I began getting the, “So, when are you going to have kids?” question. I never saw myself, not having kids, but the onset of frequent lung infections and decreased lung function was something I needed to focus on.
Ultimately, we decided that kids were not in our future. It was a heartbreaking realization that left me feeling so much guilt. In my mind, I was the reason our parents were not going to have grandkids. The best advice I can give is to always remember
that you are doing what's best for you; you're making yourself the priority. Don't let anyone make you feel guilty for that. I don't think I nipped the questions in the bud as quickly as I could have, but it's important to do so; otherwise, it will
take a mental toll.
Since then, I have focused my energy on living my best life. My husband and I love to travel. I have an incredible love for cooking -- it's my outlet. My husband has become quite the cooking partner. I always joke and say, “Couples that cook
together, stay together!” One of our favorite things to do is recreate dishes that we had on vacation. It's a way for us to bring the adventure home. I also love to do things he loves. My many exacerbations in recent years have limited our deer-stand
dates, but I'm hoping to get in the stand again this fall. We also recently started shooting skeet -- what a blast! (no pun intended).
As most in our community know, a new modulator, Trikafta®, was approved by the U.S. Food and Drug Administration, but unfortunately, I am ineligible to take it
or any of the other modulators. I have two nonsense/rare mutations and am still waiting for my turn to have hope of a new drug or treatment. People ask me if
I'm disappointed because of my ineligibility to take Trikafta. I don't think I would be human, if there wasn't a tiny sliver of disappointment; yet, I see what it has done for so many, and I can't help but smile. I hope this medication will give others
the same opportunities, as I have had. I hope they will be able to travel, go to college, get married, and have a career. You can have those things.
The CF journey is like a winding road -- take the path that works best for you. You have the power to make yourself happy. Embrace your scars and tell yourself that you are magnificent and stronger than you think. If the only thing you can do
on a certain day is to smile, then smile. I love to give hugs, make people laugh, and love with my whole heart. There are some days that is all I have to offer, and I'm OK with that. I will continue to struggle with pancreatitis and lung
infections. I will continue to have faith. This is my life, and it's beautiful.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Caroline lives in the Peach State with her husband and fur-baby, Major. She recently celebrated her 10-year anniversary with GEICO. She loves being involved with the Georgia Chapter of the Cystic Fibrosis Foundation. Her favorite chapter event is Great
Strides, where she leads her team “The Salty Anchors.” She recently became chair for GEICO’s CF Committee and is loving the challenge of figuring out virtual fundraising. When not working or raising awareness for CF, you will most likely find her
singing and dancing in the kitchen while channeling her inner gourmet cook. When she has time, she loves to share her culinary creations on her “Yankee Girl in a Southern World” Facebook
page. You can connect with her on Instagram and on 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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