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.
Figuring out your child's CF diagnosis is complicated on its own, but learning how to communicate everything that goes into caring for your child to those outside of the CF community can be even more overwhelming. Here are my tips and tricks to using your voice to both educate and advocate on behalf of your child.
August 27, 2018
Dealing With Body Issues as a Teen With CF
Meeting My Donor’s Family
When our son, Dean, was diagnosed with cystic fibrosis as a newborn, my husband and I were beyond overwhelmed, as most new parents would be. Once we began to wrap our heads around things, we started sharing the news with family and friends. Since we were still learning what having cystic fibrosis meant for Dean and our family, explaining his diagnosis in those first few months was a challenge.
As he has grown up, our conversations have changed a lot regarding how we share Dean's diagnosis. Our understanding of the disease has definitely developed, but on the outside, people tend to see him as a healthy kid -- which often brings more questions from those around us.
From navigating conversations with family and friends to preschool teachers to summer camp instructors, here are a few ways our family has learned to communicate about cystic fibrosis over the last seven years.
As I mentioned earlier, we had no idea how to tell our loved ones when we first received Dean's diagnosis; but over the years, it has gotten easier. Although they all now know he has CF, we still have to give “reminders.”
Dean is a very active kid, but keeping up with the friends and family around him can really take a toll on his health. We have to remind them, and Dean, that eating and sleeping are just as important as his medications and treatments, and that he can't go all day and stay up super late, as it will take him multiple days to catch back up.
Additionally, we inevitably have to remind some family and friends about cold and flu season, and explain which events we will and won't be able to attend because of germs. This can be frustrating at times, but we remind ourselves that we live with CF every day, and our family and friends don't. I have learned not to feel badly when I ask who will be at events we are invited to, and if anyone has been sick lately. It's a necessary check for us and a good reminder for our family and friends to be aware of what we must look out for on a daily basis.
Dean spent the first four years of his life in a very small, in-home daycare with friends. When we decided to put Dean into a half-day preschool at 4 years old, we were a little nervous. Luckily, the preschool we chose was part of a school district, had a nurse on-site, and previously had twins with CF attend, so they already understood what Dean would need.
We also worked with the preschool teachers to be sure he had access to the restroom and soap/hand sanitizer whenever he needed it, and we shared the Foundation's website and some key resources we found to be helpful over the years.
When we moved from preschool to kindergarten, my mom and my teacher “hats” really collided. Although I didn't want to be That Mom, I also knew as an educator that if we started small with Dean's needs, it could be harder to request more down the road. So, I laid everything out for the school during our initial meeting. Because of this, we decided to have a 504 plan for Dean as opposed to an Individualized Education Plan (IEP).
Once we developed a 504 plan that accurately addressed his needs, we decided it was time to share his CF with his classmates as well. So, when the teacher came over for her home visit (something all teachers at Dean's school do), we made sure it was treatment time so she could see him do his vest and nebulizer treatments and ask questions. Additionally, we gave his teacher a book about CF to read to the class with time for Dean to answer questions from his classmates.
Because we worked so closely with his teacher to explain Dean's CF, his friends and classmates are very aware of his needs. In fact, when I go on field trips or visit at lunch, they will tell me why he needs to take his enzymes!
As we get ready for second grade, Dean and I are working on writing some more personal things about what having cystic fibrosis means to him to share with his class this year along with the book.
This summer was Dean's first time at a day camp where the staff did not know him. Because of this, I reached out to the staff before camp started, shared Dean's 504 plan, and requested a short meeting with them prior to his first day. The staff was extremely accommodating, and even called me a couple of times to let me know when there were sick campers in his cabin. We made simple accommodations such as sending his own bottle of water and enzymes in his lunch box every day, and requested that Dean bring home his camp T-shirt daily so we could wash it each night.
The fact that my child has cystic fibrosis is one of the first things I share with new bosses and coworkers. Kids inevitably come up pretty early in the conversation when I meet someone new at work, so I don't shy away from the fact that Dean has CF. And if kids don't come up, the “breathe” and rose tattoos on my wrist do. I take these moments as opportunities to advocate and educate those I work with about cystic fibrosis.
I don't ever want anyone around us to be afraid to ask questions about CF, what it means for Dean, how they can help, or anything else for that matter, and if I don't share his diagnosis from the onset, it makes it difficult for people to feel comfortable asking later on. I've found that educating the people around you makes a huge impact, as I even have had coworkers tell me that they asked their doctors if they were CF carriers when getting pregnant because of what they learned from our family.
I've talked to many CF families and CFers since Dean's diagnosis and I've learned that everyone has their own way of sharing and explaining CF. As Dean grows up, I'm sure the way he shares his disease on his own will change. But no matter what, my husband and I will encourage him to be open about who he is -- CF and all -- and to advocate for himself as he educates and shares with those around him.
Mother of a child with CF
Rachael is the mother of her daughter, Renley, and her son, Dean, who was born with cystic fibrosis. A graduate of Indiana University and University of Indianapolis, she now works for AdvancED - Measured Progress, a non-profit education organization where
she provides support and professional learning to school and system leaders. Rachael and her husband, Matt, are very involved with the Indiana chapter of the CF Foundation. Matt is a member of the Indiana chapter's board, while Rachael volunteers
at events and has been the chair of Indiana's Cycle for Life since the first ride in 2013. Rachael is also a member of the Foundation's Community Voice Editorial Board, Research Voice, and participates in a variety of advocacy efforts. Rachael and
her family live in Indianapolis. You can contact her at email@example.com or @RachaelHavey on
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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.
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