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.
When I finally broke things off with my ex Pablo, I soon met Frank the tank. Although Frank has been great throughout my process of waiting for a double lung transplant, I think I'm ready to take a step back and breathe on my own.
February 14, 2017
Father Worries That Proposed Health Care Reforms Could Affect Daughters With CF
Top 3 Most Romantic Blog Posts of 2016
I just got out of a very serious relationship. My ex and I were pretty co-dependent; wherever one would go, the other would follow. Although we lived in Colorado together and went on many adventures, there were several cons to Pablo.
For one, he was a loud-mouthed schnook. I remember the first time we went to the movies together, and boy was he loud. For living in a state where you are a mile closer to the sun, he also really disliked sitting in the full sun for very long, which seriously cut down on my sunbathing time. And lastly, he was clingy … clingy like cling wrap.
I don't know how I stayed with him so long. He always had to be next to me for just about everything, and it started to drive me a bit bananas. As time went on, I unfortunately came to realize that even though Pablo treated me pretty well, I needed more substance and less cling wrap.
Oh, did I mention that Pablo is a portable oxygen concentrator?
When I moved out to Minneapolis this fall, I was soon introduced to my current boyfriend, Frank the tank. He was like a breath of fresh air. He's taller than Pablo and, as an added bonus, is a bit of a silver fox.
I am currently waiting to get a lung transplant at the University of Minnesota, and Frank has been very understanding during the whole process. I've been in the hospital for about 11 weeks now and he has been here every day, rain or shine … or negative-degree weather. On the days I don't want to go on walks or go to physical therapy, he is very good about encouraging me to get up anyway and stretch my legs.
He is also pretty adventurous and will follow me down creepy dark hallways late at night or when my sister isn't here. Even though Frank is more of an introvert, I feel like he surprises me every day. Generally, Frank is an optimist who sees life as the tank half full.
Recently, however, I've been feeling that my relationship with Frank is becoming more of a friendship. After my double lung transplant, I have a gut feeling that Frank may no longer be in my life. I think it may be time to spread my wings and focus on myself.
Although I've learned a lot about myself from these past two relationships, I think I'm done with co-dependent partnerships. Don't get me wrong -- I'm thankful for Frank the tank and all of his support, but I am ready to breathe on my own with my new lungs.
In case you were wondering about Pablo, he's dead at the bottom of my closet. You know how it is … if you don't keep up the charge on portable oxygen concentrators, they lose their juice.
Maybe next Valentine's Day, I'll be sharing chocolates with my two air bags instead.
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. 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