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 our son was diagnosed with CF, the clinic director sat with me for hours answering my questions. Since that day, I have wanted to bottle up his advice and become a voice of encouragement for new CF parents.
November 9, 2015
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“Go live your life.” Okay, we can do that.
“Go live your life.” Oh, you mean it.
"Go live your life.” We've got this.
Amidst the grief, anger and denial I felt when my son Major was
diagnosed with cystic fibrosis, there were many questions. Could he go to the park? What about the grocery store? Can we show him off at work, or are there too many
The words that our pulmonologist kept repeating back to us were -- you guessed it -- “go live your life.”
You see, we were very lucky. Major was already admitted to the NICU of Blank Children's Hospital when he was diagnosed with CF. I know that none of this sounds lucky, but bear with me. Because we were admitted and we had to wait several days before Major could go home, the director of our
CF clinic wanted to meet us and go over any questions. My husband and I assumed that we would talk for 15 minutes and that would be that.
What happened next changed everything. Dr. Alladdin Abosaida, M.D., clinic director at Blank Children's Hospital, walked into our hospital room with empathy and a smile. Dr. Abosaida quickly took me from a bawling new mommy to a determined new mommy in a matter of hours. That's right, I said hours.
This was no 15-minute conversation. Dr. Abosaida sat down with me one-on-one while my husband was at work. He explained
what cystic fibrosis is and what Major's
mutation meant for him and for our family's new lifestyle. He told us about
what the CF clinic is like … the list could go on forever. After about an hour, my husband joined us in the room and I thought for sure that the conversation would wrap up there and I'd be charged with relaying everything to him. Not even close. Dr. Abosaida went through everything with my husband so that he could have the same experience I'd had. We both got the opportunity to ask any questions that were on our minds. Dr. Abosaida did not leave the room until we both felt comfortable and ready to go
fight CF with Major.
Many of our initial questions that day centered on what Major's life would look like. Could he get a job? Could he play sports? Would he be able to play outside? The answer to nearly every single lifestyle question was, “go live your life.”
It took a while for my husband and me to let it sink in that we, and Major, could handle this diagnosis. But nearly two hours later, we were ready to go live our lives.
Since that day, I have wanted to bottle up Dr. Abosaida's advice and become that voice of encouragement for
new CF parents.
It is a scary and overwhelming diagnosis, and I bet that many parents have many questions like we did. However, the experience that we had is not one that can be simply duplicated with a doctor's busy schedule.
So, when the formation of a Parent Advisory Council was proposed at our CF clinic, I immediately jumped at the chance to become involved. This was how I could help new parents develop a positive attitude toward
their child's cystic fibrosis diagnosis and start their journey on the right foot.
To date, we have created a great handout for new parents to receive at their first CF clinic visit. There is also some great literature provided by the Cystic Fibrosis Foundation that is distributed at this visit as well. The purpose of our handout is to provide a brief overview of CF before they work through more detailed materials. It breaks down some of the core
infection control guidelines from the Foundation that a new parent needs to know immediately. We also included testimonials from parents whose children are thriving: staying healthy, playing sports and being with their friends.
Being on the Parent Advisory Council has allowed me to start helping other parents live their lives. I hope that if you are presented with the opportunity to serve on or help form a Parent Advisory Council, you will take it.
Mother of a child with CF
Jaclyn is a mother to her son, Major, who was born with cystic fibrosis. A graduate of the University of South Dakota, she now works in the financial services industry and also runs an online health coaching business. Jaclyn is a state advocate for the Foundation, a member of the CF Parent Advisory Council at Blank Children's Hospital, and an active fundraiser for Great Strides. She also serves as the Foundation's 2019 national advocacy co-chair. Jaclyn lives in Des Moines, Iowa, with Major, her husband, Drew, and their dogs, Eason and Lennon. Follow her blog, MAJOREASON.
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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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