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.
I want my daughter to be prepared for the world when she grows up, and that includes taking charge of her CF. She is only 4 years old, but it's never too early to get her ready to take on her CF care by herself.
September 30, 2020
Disability is a Reinvestment, Not a Defeat
Despite the Detours, I Live a Full Life With CF
We are not raising children -- we are raising adults.
Recently, after going downstairs to put down her 7-month-old brother for a morning nap, I heard the rumble of Desi's machines. Desi had put on her vest for her chest physiotherapy (CPT) machine by herself, inserted the tubes into the vest, added her first medication into a nebulizer (that I had set out and assembled), attached the tube to the nebulizer, and then turned it all on, humming and helping
She did it. All by herself. I was (and still am!) so proud.
Do I hate that this is our reality? Yes. Do I wish this wasn't a milestone? Yes. But I choose to look at this through the lens of gratefulness and pride that she understands HOW to take care of her own body. At 4 years old, she 'gets it.'
So how did we get to this milestone? Here are some ways I supported and encouraged Desi. My hope is these will encourage you, too.
Toddlers can buckle their own vest and understand the name of a medication. Preschoolers can name their medications and their order or the time of day they need to be taken. Elementary school-aged children can assemble their treatments and speak to their
clinicians. Middle schoolers can speak with pharmacists to tell them which medications need refills. High schoolers can do all of this and be cognizant of when and how it gets completed in a day -- as well as the consequences of not following treatment procedures.
No matter their age, kids can play a part in answering questions at clinic and participating in simple, and eventually complex, steps at home!
Basically, there are ways to give your child an opportunity to 'tag in.' Ask yourself, “How can she play a role in completing the task right now?”
For example, when Desi was younger, I would talk to her as I increased the CPT machine button to 10 Hz. “Alright, this first part starts at 10. Would you like to turn it on?”
Then, as she mastered that, I would ask, “Would you like to push the number arrow on your machine up to 10?”
As she became more comfortable, I would then ask “Now what Hz does the first part start on? Yes, that is correct. Would you like to start it?”
Each step builds on top of the other, laying a strong foundation of confidence in the child.
But, I believe it is also important to remind ourselves that this lifestyle and routine is a marathon filled with opportunities to become a relay -- we can take information we learn and periodically pass the baton to our kids.
It is our job to strategically arm our cystic fibrosis fighters with a toolbox of compliance and education. We walk the line of educating them but not overwhelming them, giving them moments of independence but not dumping it on them all at once.
Yes, it is easy to gather nebulizers and pills in another room then say “Here, take these or go ahead and put this on, please.” But the more control Desi has, the less likely she is to push back. The more knowledge she has, the more confidence she possesses
to educate others on what -- and why -- she does what she does. The earlier she is (strategically) exposed to her care the more likely she is to lead a lifetime of compliance; I remind myself of this daily.
We never know if a door of opportunity is open unless we offer chances for our children to walk through it and, hopefully, thrive.
As caregivers we are not here to clip their wings, but rather to aid these little birds in successfully flying from the nest one day -- and soar wherever they want to go.
“It's not what you do for your children, but what you have taught them to do for themselves, that will make them successful human beings.” -Author Unknown
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Mother of a child with CF
Jamie lives in Atlanta with her husband, Ross, Great Dane, Coley, and daughter, Desi. She completed her undergraduate degree in human development and family studies with a focus in child life and preschool development at Auburn University, and received a master’s degree in early childhood education (specifically Montessori education) at Belmont University. She enjoys spending time in the mountains of North Carolina, appreciates the art of handwritten letters, and is currently working to implement the “Konmari method of tidying” at home. When not at home, Jamie can be found taking an exercise class at Pure Barre, tailgating and cheering on the Auburn University football team, or spending time with local moms of children with cystic fibrosis sharing ideas. To follow more of Jamie and Desi's story, you can find her on Instagram @DrivingMissDesi or visit her online store.
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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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