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.
Here's my experience with that awkward moment when you have to tell that one person who has always been there for you your whole life that they need to just let go a little bit.
November 11, 2016
A Message to the Community Following the Election
Doing What You Love for the One You Love: One Grandma’s Story
Transitioning into adulthood is a hard game to play and comes with many challenges. One of the hardest and trickiest of these challenges is gaining independence -- especially when you have cystic fibrosis. As many of you know, CF takes an immense amount of treatment and effort. This often means that we grow up without a lot of independence. Not only are we dependent on our CF treatments, but we are also dependent on our parents to care for us.
It is no secret that CF moms are notorious for their love and passion for keeping their kids with CF healthy. My mom was no different. When I was small, she used to sit by my side during every treatment, feed me until I was about to burst and accompany me to each clinic appointment.
Although this worked when I was a kid, this soon became a problem when I started budding into an adult. My mom was so used to speaking for me and knowing the details of my disease that she would forget that I wasn't a kid anymore. All throughout
college -- well past when I started considering myself an adult -- she was still accompanying me to clinic until finally I had “the last straw.”
I had a particularly rough summer and was feeling miserable. You know it's bad when someone as stubborn as myself actually makes an appointment instead of waiting for my scheduled one. I arranged all the details of my life, including time off from work, so that I could be admitted into the hospital after the appointment.
Long story short, my mom, my grandma, my sister, my boyfriend, my niece, my doctor and I were all, for various reasons, in this tiny exam room. It's no surprise that my voice was completely gone. Everyone had decided that I should be taking a treatment route that I knew was not the answer for me: oral
I knew my body well enough to know that the antibiotics were just going to draw out how I was feeling and screw up all of the life arrangements I had spent the whole previous week making. I left the appointment brimming with tears of frustration, trying my hardest not to let them fall and show my mom any ounce of ungratefulness.
After having a few days to mull things over, I knew that my mom could no longer attend my appointments. I just had no idea how to tell her. No one wants to be the one to tell their mother that they don't need them for such a large part of their life anymore, but I knew I had to do something.
The next morning, I called my CF clinic. I had no idea where to turn and hoped they had dealt with this situation before. I explained how I felt, feeling my tears beginning to well up again. Funnily enough, they felt the same way. In a sense, that made it easier. They walked me through different ways that I could explain to my mom that I was an adult and should be
taking charge of my CF care. I had never really thought of my CF clinic as a social resource before -- only medical.
After having the day to think about the different scripts my CF clinic had to offer and rehearsing my own versions, I gave my mom a ring. The butterflies in my stomach ... I seriously thought I was going to puke.
The conversation went much smoother than I was expecting. Yes, she cried. That's pretty much inevitable with her and probably most moms. However, she listened to me and respected my voice and opinion. She ultimately understood that it was time, and probably past time, to let go just a little more.
Because my parent's house is basically on the way home from my CF clinic, I suggested that my boyfriend and I would stop by for dinner on my way home after my evening appointments. Now, I can tell them all about my clinic visit during dinner in a way that is warm and welcoming instead of stressful.
To all the CF moms (and parents) out there, you are incredible people. You are some of the strongest and most caring people in the world. But just like there is a time to let your child venture out into the real world, there is a time to let them venture out into the adult CF world … on their own. I understand that it's scary, if not totally terrifying. But we manage, we learn and then, we succeed.
Young adult with CF
Wendy is a young adult with CF who is finding her way in the world. She is a passionate writer and advocate for CF awareness, and is currently training her service dog, Finn, for when she needs a little extra support throughout the day. In her free time, Wendy enjoys music, traveling, and reading, and credits her CF for giving her more drive to love life and all it has to offer. Follow Wendy on her blog, The Living, Breathing Wendy.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails