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.
Sending our son to school was scary, but we have a plan to keep him healthy.
August 19, 2016
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One of the most difficult lessons my husband and I have had to learn during our son's journey through cystic fibrosis is to prepare as best you can and then get out of the way so your child can experience life.
Our youngest son, Silas, watched his brother, Sebastian, wave from the bus window morning after morning until finally, one day he asked, "When do I get to ride the bus?" We didn't have an answer. We had seen neighbors' and friends' children sniffly with colds as they moved through daycare and schools, and Sebastian's elementary school even closed for a few days when they discovered a child with whooping cough. Silas is bright, sociable and knowledgeable about his CF, but we both feared the worst if we sent him to school: extra damage to his lungs. As the deadline for school got closer, we reluctantly decided to send him to school. And the summer before Silas turned 5, I found myself daunted, attempting to navigate the system and ready a 504 plan to ensure my son's good health would continue while he attended school.
A 504 plan is a document that outlines how a school will accommodate students with special needs. We had heard of 504 plans before and we knew ours would detail all the care our son would need during his time at school, but preparing it was intimidating. We wanted to be sure we could cover everything from taking enzymes to educating classmates and staff about CF, and we worried we might forget something, so the best place we knew to start was with our CF care team. We called our CF clinic's social worker and asked her to forward a copy of what the team typically recommends for school accommodations. We received recommendations and sample plans from helpful parents who'd already been around the block with these issues. We even read laws about accommodations in schools for 504 plans in Pennsylvania, our home state. After almost a full week of excessively compiling almost 50 different bulleted ideas, we were ready to start writing our son's plan.
We considered a strict plan with a numbered list to include the accommodations our son would need, but instead we realized that we wanted them to get to know our son, his personality and his independent nature. We introduced our son by including the hobbies and activities he enjoys, as a prequel to them meeting him. We included images of my son so everyone could put a face to a name -- instead of focusing only on his CF.
We had to do more than just list what we thought our son would need. We also personalized his 504 plan by adding descriptions to his accommodation requests. We explained the benefits of his necessities and made sure we stressed the importance of how CF would affect our son directly. We had to communicate those needs with strong evidence, so it definitely helped to have a list of recommendations from the CF clinic to prove why our child might need an all-access pass to a private restroom, why he shouldn't use the school's water fountain or why an air conditioner is really important for classroom use. After a good look at all of the research we did, we took into account these categories:
At the end of the 16-page plan, we included contact information, helpful videos and educational lesson plans for his teacher and added a list of resources for everyone to find out more about CF.
Although it took all summer consulting with our CF care team, setting up meetings and emailing paperwork to the school administration to make sure that everything was in place, we finally felt assured we were ready to send him to school. Sometimes we still wonder if we made the right decision for him by leaving him in the school system's hands, but we realized that these are normal fears when a child begins a new phase in life. Thankfully, with our 504 plan in place and with the help of some receptive and kind administrators, we know that there is a protocol that everyone will follow to be sure that our son is best taken care of right from the start.
Mother of a child with CF
Erin is the proud parent of fun-loving Silas, her CF warrior, who was diagnosed at 10 days old. She is a digital and print copywriter who loves hiking, taking photos and writing poetry. She has an MA in nonfiction and poetry from Wilkes University and resides in northeastern Pennsylvania with her husband, Aaron, and two sons, Sebastian and Silas. Check out her newest work at: https://erindelan.wordpress.com/ and on Instagram @erin.delan.
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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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