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've found it hard to cope with CF as I have gotten sicker, and loneliness comes about in both physical and emotional ways. Even though the people in my life may not know exactly what I'm going through, I'm trying to let them in on what I'm feeling.
September 24, 2019
Motocross Freed Me From CF Depression
Avoiding CF Information Overload
Isolation is a very weird concept. I looked up the definition and the first couple of entries described “a physical state of being secluded from other buildings, places, and people.” However, if you keep reading, you'll find a definition that says, “having minimal contact or little in common with others.” That is exactly how I would describe what it is like to live with cystic fibrosis.
Growing up with cystic fibrosis, I didn't feel much different from my peers. I still went to school, played team sports, had sleepovers with my friends, and lived a carefree life -- just with the added bonus of respiratory treatments twice a day, an annual hospital admission, a few all-day doctor appointments, and pills. It wasn't until I turned 17 that the loneliness from living with this illness started to set in.
For the first time, I started missing more school than I was attending. While I was admitted to the hospital three times in a single year, all for no less than two weeks at a time, I couldn't help but to feel truly different from all of my friends. While my friends were preparing to go away to college, I was just trying to keep my head above water and take classes at a local college while commuting from my family home. Unfortunately, my health became a bigger issue and I had to take a medical withdrawal my first semester. That was the last time I would be surrounded by my peers.
Over the past few years, my lung function has dropped by an alarming amount; for the first time, I've lost weight to the point of needing a G-tube; and my infections have become more difficult to treat -- I need IV antibiotics every 1-2 months lasting no less than three weeks at a time. Yet, on social media all you see is a smiling face.
What people don't think about is how isolating this illness is. There are two sides to the loneliness -- emotional and physical -- and both contribute a lot to depression and anxiety that many people with CF face.
Physical isolation. Many people with CF become too ill to finish school or work, which forces them into an early retirement. A lot of people fantasize about not having to work and spending every day lounging on the couch getting caught up on their latest Netflix binge. “Sounds like a dream!” is a common response I get when I explain to people that I don't work, go to school, or really do anything. What they don't think about is the loneliness that comes with waking up to an empty house five days a week, not feeling well enough to leave the couch, and being alone for most waking hours.
Hospital admissions can be extremely tough, when no one is able to visit and spend quality time with you. Luckily, most nurses are great, but there are days where you just want your significant other, parents, best friend, or sibling to hold your hand, bring you Chick-fil-A, and watch trash TV together -- to take you out of the mental darkness that a hospital admission can bring. But, that's not always possible.
Emotional isolation has stolen my joy on multiple occasions over the past few years. Don't get me wrong, I have an amazing support system. There is nothing in the world that my husband and family wouldn't do for me, and they try their hardest to be there for me. The fact of the matter is that they will never be able to fully understand. My parents and husband are the only ones who have seen me at my lowest and weakest moments. I truly believe you have to live full time with someone with CF before you can really start understanding all it entails.
As I've gotten sicker, I have found it more difficult to relate to my friends. My daily life looks very different than most young adults working full-time jobs. And to be frank, it's not a happy topic to focus on. They may try their best, but I know they don't know what my everyday looks like anymore and I doubt they could wrap their heads around it -- most people couldn't.
The only people who really understand are my friends I've made online who also have CF. They are the only people who I know I can rant to, complain to, and celebrate with for all minor and major accomplishments, setbacks, struggles, and heartaches. My online friends understand from experience and validate my feelings. They're my security blanket. Yet, they are people I can never spend time with person, without risking both of us getting sick.
It's very hard to not be able to hug the people you feel closest to.
The depression that can come from battling an illness that none of your peers can fully understand is not to be taken lightly. When the emotional side of feeling alone meets the physical side of being alone -- because you're unable to attend school, work, or in the hospital for weeks on end -- it's a recipe for a mental health disaster.
As someone who is currently working through this exact struggle, I suggest to anyone who feels the same way to take control of their life and figure out how they want to live it. Making the most of evenings or weekends when your family and friends are no longer busy can help make those weekdays more bearable. Don't be afraid to express in great detail what you're going through and how you feel to your family and friends. We can't expect them to know if we don't tell them. Any friend or family member worth having in your life will understand, be glad you told them, and adapt to make you more comfortable.
Those CF friends you can't meet in person? FaceTime them, Snapchat them, text them throughout the day! It's not the same as being together face-to-face, but it helps you feel less alone in this crazy world and that could make all the difference.
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Adult with CF
Holly was diagnosed with cystic fibrosis at 3 years old. Today, she is a 24-year-old living in north metro Atlanta with her husband, Cameron, and their dog daughter, Winnie. Holly has been actively involved in the Cystic Fibrosis Foundation since she turned 18. A former blog writer, she recently decided to redirect her passion for advocating and sharing her experiences with CF into video. She runs the YouTube channel “Dreaming of Breathing” where she posts “day-in-the-life” style vlogs and informational videos related to CF. She also documents her struggles and accomplishments with CF through her Twitter (@LifeAsHolly) and Instagram (@hollyseay). When Holly is feeling healthy, she loves cooking, going to concerts, traveling, a good latte, or a glass of wine.
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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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