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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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 had a lung transplant earlier this year and, although I'm able to do more physically than I could before my transplant, I still have cystic fibrosis. I still need support -- support from the CF community, from the CF Foundation, and from you.
December 13, 2017
Transitioning Back to Real Life After Hospitalization
The Matilija Poppy Club: Navigating the Loss of a Child With CF
The past year has been eventful for me, to say the least. If you read my previous blog posts, you know that I was on supplemental oxygen and went through a couple of dry runs before I had a double lung transplant in May.
Life post-transplant has been both real and surreal. The fact that I can now
breathe without needing the assistance of oxygen coming through a tube has been strange in a good way. The fact that I can laugh without going into a coughing spell, walk around without becoming winded, or go on a hike in the Rocky Mountains is
pretty darn surreal.
Right after transplant, doing basic things for myself again was the first step before hiking the Rockies -- like cooking, washing dishes, and making my bed. While these are small tasks for most people, for someone with cystic fibrosis, with as low lung
function as I had, they were a big challenge. Just standing to wash my face was hard. On some days I would race to wash as fast as I could before the typical gasping for breath started.
Post-transplant life has vastly improved, and I wouldn't trade anything to go back to how it was before. The possibilities of what I can do now are beyond exciting. I can live out my travel goals for the most part, with more freedom to just get up and
go. I can pack one suitcase instead of multiple cases by not having to fit all of my medical supplies into one bag. And, the destination is of my choosing, with maybe just a little bit of restriction due to germs and access to medical care. One place
I'd love to visit outside of the United States is Madagascar. I have always wanted to go there because it's one of my dreams to see the baobab trees, chameleons, and lemurs.
I am more connected with the CF community than I ever have been. It is a huge support system and I am so lucky to be connected with it. It wasn't that long ago that I had minimal contact with other people who have CF. Once I explored the social media
world and found other people with cystic fibrosis, my world changed. I've made amazing friends who I talk to on a regular basis. I'm even part of group chats with others that have become like a family and serve as a wonderful support system for all
of us. It's incredible to see how each person who has CF lives their life with this disease. We may need to live our lives with limitations, but we decide how to deal with them.
Many people believe that people who have lung transplants don't have CF anymore, but I still have this disease -- just not in my new lungs. In addition to things like taking anti-rejection medications and regularly following up with my transplant team,
I still have to take enzymes before I eat, try to gain and maintain weight, and I still see my CF care team four times a year.
The CF Foundation supports individuals like me -- helping people with CF to live out our dreams and encouraging us to spread our wings and reach for our goals. The Foundation supports research and care so people with CF can climb the mountain, go to college,
or even go to Madagascar and see the lemurs. That's why I'm asking you to join me in making a donation to the CF Foundation this
Adult with CF
Rima was diagnosed with cystic fibrosis around 4 months old. A graduate of Franklin Pierce University, she earned her bachelor's degree in environmental science. She is currently unable to work, so she is focusing on health full time. She received a double-lung transplant at the University of Minnesota Health in Minneapolis in May of 2017 and plans to move back to Colorado soon. Follow Rima and her sister, Laima, as they spread awareness about CF on Instagram at lung_story_short or on their blog, Lung Story Short. You can also follow Rima's personal Instagram account, rimasaurusrex.
Share this Post
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.
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