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.
No matter how good your school district is, be prepared for unexpected challenges when getting your 504 plan in place.
September 19, 2016
Why It Isn’t About Me
Honoring Her Son and Healing Hearts: One Mother’s Story
Cystic fibrosis can be intimidating: there are no outward physical changes, no mental deficiencies. Yet internally, a person with CF struggles every day to gain or maintain a foothold on his or her personal health and well-being. And it is this fear of the unseen and unknown that can be such a challenge to success with a school accommodations plan. During the three months we prepared to send our son, Silas, to school, our biggest challenges became meeting times, helping others understand the needs of a person with CF and distributing medications. Because Silas is our school district's first student with CF, we had the additional challenge of creating standards in the district for others with unique medical needs.
1. Preparing and Scheduling Meetings
Public schools keep an orderly system of hall passes, sign-out sheets and classroom bells, and we wanted to inform as many staff members as possible to avoid any misperceptions about Silas “breaking” school rules. After writing Silas' 504 plan, the next challenge was getting the right staff members together for an informative meeting and Q&A session.
We decided to include the principal, classroom teacher, program director, nurse, both classroom aides and the program secretary, but it was difficult to coordinate everyone's schedules. We were attempting to meet over the summer before the school year began, and administrative meetings, summer break and fall school preparations made coordinating our plans a little more difficult. After a month of discussions, we decided that, instead of getting everyone together for one large meeting, we would schedule three separate meetings and communicate through email to discuss the plan details.
2. Explaining CF
Most people haven't encountered CF. Fewer have heard of it. So our next big challenge was helping everyone understand the intricacies of CF. For each meeting, we wanted to be sure that everyone would get the same important information. So aside from Silas' 504 plan, we prepared a binder with background materials on CF that could be kept in the classroom for any substitutes and aides to refer to. We made index cards with images of Silas' medications and instructions on how to administer them. We also brought in his medicine with the correct prescription labels, so everyone could see what he would be taking at school. In addition, at each meeting, we gave a short presentation that explained the details of cystic fibrosis. Visual examples helped us explain CF, how it affects Silas and the accommodations the school would need to make for Silas' safe transition to school.
After explaining CF to members of the school administration, their responses ranged from confusion to sadness. One person commented that Silas “looked so healthy.” It was difficult to see everyone's reactions, but it was also important for us to acknowledge these thoughts, be understanding and let others have those feelings so they could begin to understand the importance of their new role at school for Silas.
We responded empathetically, but we also made sure that the staff's initial intimidation and fears didn't overshadow what we needed them to do for Silas. We took their questions and concerns seriously, even when someone suggested we hire a nurse to watch Silas for overheating in gym class. Silas may need to rehydrate more often or occasionally sit out activities because of his CF, but we assured them that a personal nurse would not be necessary. After the meeting ended, the staff's biggest concern was: who would administer Silas' medications?
3. Who Gives the Enzymes?
Typically, the school nurse would give enzymes, but our situation was a little more complicated. We were shocked to discover that Silas' school nurse would be available at Silas' school only two days a week because she traveled between all three schools in our district. We suggested an alternative: his classroom teacher could be trained to give Silas his enzymes. We also proposed that he take them on his own before his meals. The school again recommended a private nurse, which parents of other children with special needs in the district had arranged in past situations.
We were at an impasse. We thought that having an on-site nurse following him to his daily activities was unnecessary, especially because Silas is independent at home. He takes his enzymes and his own breathing treatments. We also worried that an adult following him might draw negative attention from students who might see this accommodation as a way to bully Silas. We stood our ground and, after three more weeks of negotiations, the school agreed to rearrange the nurse's schedule to ensure she or the principal could provide Silas his enzymes. After Silas' first week of school, the program director felt comfortable enough to offer to give Silas his much-needed “food helpers.”
Although the school was initially challenged by Silas' needs, we believe that our determination to get Silas what he really needed while in school will benefit both Silas and students with special needs in the future. And we are grateful that after some education and open communication, we have a team that is willing to fight CF alongside us while Silas attends public school.
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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