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.
Before I had my son, I had organized my life in such a way that everything flowed in orchestrated harmony. But I found that as he grew I allowed his needs to eclipse my own, and my life soon fell out of balance.
May 11, 2016
Invisible Scars: My Life Post-Transplant
Living Above My CF Diagnosis in the ‘60s and Beyond
Throughout adolescence and into adulthood, I always envisioned myself as the plate twirler at the circus. We all know the guy -- the one with a dozen plates all spinning at once, giving just the right attention to each one to keep them continuously moving.
For the majority of my adult life, I had organized my life in such a way that everything flowed: work, relationships, health and hobbies all moved in orchestrated harmony. I thought that I had it all figured out. Then I had a baby, and all of those perfectly spinning plates came crashing down.
That's not to say that my son isn't the best thing that's happened to me. It was just that with a squishy newborn, I quickly forgot life's lessons on balance. Life is different with him. This tiny human relies on me in every way. I discovered that as his needs grew, I allowed them to eclipse my own. I took how I felt and chalked it up to being a new mom, but the reality was that my life was out of balance and I silently took my needs out of the equation.
I started skipping therapy, missing meals and opting out of treatments if they posed any risk to my milk supply.
Looking back now, I can see the downward spiral that I was creating for myself. It's funny though -- sometimes you just don't see yourself at rock bottom until you're safely on the other side.
Reality hit hard at one of my appointments after my son turned one. By that point, the first year of my son's life had become the hardest and most challenging of my own. My PFTs were unrecognizable. 52?! How was that even possible? Generally speaking, I usually hovered in the 90s. My head was swimming. I used to be the girl who was running half marathons two short years ago and now I was winded from climbing the stairs. I had let life bury that girl who fought for herself with unwavering tenacity, and it was time to pull her from the rubble.
Finding balance at this new stage of life took time and practice. It took swallowing my “Wonder Woman” pride and asking for help. I had to work hard to find myself within my own life and to carve out the time for myself that my health so desperately needed. Nearly a year later, I still find that I am a work in progress. Thankfully, I have discovered some ways to re-establish balance and keep my health a priority.
The smallest change, which has made the biggest impact, has been setting up my environment for success. On top of being a person with CF, I'm also a wife, a mom and a full-time elementary school teacher. Essentially, I have four full-time jobs, so multitasking is a must. To ensure that I never skip therapy, my vest is now tucked neatly under my desk. I can complete a session while working or, more often, while sitting on the floor playing with my son. I'm learning to embrace this time together, and he's learning not to be fearful of mommy's big, shaky machine -- he's even become quite the master at pushing the start button.
Another thing that I have learned on this journey is to become someone who plans. Everything needs to be planned out. Everything. On Sunday mornings, I take an hour to look at the week ahead. I schedule my treatments and therapies as though they are appointments with the CEO of my life. (You don't cancel on a CEO.)
I schedule calls for refills and prescription pickups, personal time and fitness sessions. I plan dinners for the entire week, and pack snacks and medications into “grab and go” baggies. Mornings in our house are hectic enough, so with a variety of snacks at the ready, I'm far more likely to have a successful day. It all falls back to that personal goal of “setting myself up for success.”
Lastly, and probably most importantly, I've learned that balancing this life sometimes means asking for help and it sometimes means just saying “no” to certain things. I think this is challenging for a lot of us living with CF. We like to think that we're stronger than CF, and we are, but we're only at our strongest when we rely upon those who rally around us. It's been an adjustment, but I've come to find that my loved ones will happily and wholeheartedly keep life's plates spinning for me when I need to stop and rest.
Adult with CF
Jennifer was diagnosed with cystic fibrosis when she was 16 years old. A northern Virginia resident, she spends her days teaching elementary school. As a CF advocate, Jennifer spreads knowledge and awareness of CF as a member of TeamCF and Run to Cure CF. In her free time, she enjoys photography, spending time with her husband and son, and typing up recipes for her blog, Twice Around the Pan.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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