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.
Along with experiencing the typical emotions every parent has when their kids start school, I've also had to teach my son, Maddox, to take responsibility for his cystic fibrosis.
Elaine Ruh, MBA, PHR, SHRM-CP
December 12, 2019
Role Reversal: How I Balanced Caregiving as a CF Patient
I May Not Look Sick But My CF Is Still Real
As our son, Maddox, turned 4, it was a big day in our household because he would start 4-year-old kindergarten a couple of weeks afterward. It meant that it was a new school, new teachers, new schedule, new routines, new friends, new friends' germs, and
everything else that goes along with this milestone.
Watching your child head off to school for the first time is a huge transition for a mom, but as a mom of a child with cystic fibrosis, the “mommy anxiety” goes up another notch.
Will he make friends? Will he find his bus? Will the teachers give him the enzymes? Will the other kids look at him differently for taking them? The questions can go on forever.
As soon as we made the decision that Maddox needed to go to school, it seemed like school supplies were sold out and summer was coming to an end. The first day of school was marked on the calendar and so started the many meetings and prep work for his
Upon learning that Maddox has CF, the nurse of the school district scheduled a meeting between us and Maddox's teachers, the school secretary, and the school nurse so we could discuss CF. During the meeting with the school nurse, I quickly found out that
Maddox's teachers never had a student with CF, so it was a chance for me to tell his story, explain what CF is, how we found out Maddox has CF, and describe our daily routine.
I talked about the importance of the enzymes and why Maddox needs to take them. Because Maddox takes bigger pills that he is unable to
swallow, we went through the applesauce protocol. I was proud to tell them that if they did not do it correctly, Maddox would clearly let them know. We also talked about his cough and they assured me that if they notice he is starting to cough more
or that he is struggling, they will let me know. The teachers asked for my cell phone number so that they could text me if they had concerns. They were very receptive to what I had to say and were asking a ton of great questions, which means they
were engaged -- which is a good thing. I had a chance to tour the classroom ahead of time and looked at different things they had, and it was a mom moment, 'my little guy is going to school here.' The classroom is right across the hall from the bathroom
and we discussed why he might need to go more often and that if he needs to go, to let him go.
I left the school feeling comfortable that we had a plan in place and that the teachers and staff were on board. There are 23 other students in his class, one teacher, and one aide. That's a lot of 4-year-olds to keep track of, so Maddox and I had a chat
about what he is responsible for when he's at school.
Maddox takes a snack to school every day. Because it has to be consumed in less than 10 minutes, it is truly a snack and not a full meal. Every morning, Maddox and I decide what his snack will be for the day. The amount of enzymes he needs to take depends
on what foods we choose as his snack. There is a copy of Maddox's enzyme prescription at school. If his snack requires an amount of enzymes that differs from the prescription, I send a note in his lunch box for his teachers. I then remind him to take
his enzymes and tell him how many he needs. Maddox has something different for snack every day, so we always chat about it.
The Wednesday before school started, Maddox and I dropped off his school supplies and we met his teacher. At first, Maddox was not excited for the drop off. We walked around until he found his name on the backpack hook and then we entered the classroom.
He had a chance to see all the cool stuff the teacher had set up and to find his chair. His teacher saw him and said with the biggest smile, "Hi Maddox!" He was so excited that she knew his name.
The first day of school came. Maddox was excited and I was a ball of nerves. As we entered the school, all the students in his class lined up and we said goodbye. He didn't look back. I hid in the back, watching him. He just hung out and watched the kids
around him. When it was his class's turn, he walked with such confidence. I went back to the car, tears in my eyes. Mom was having a harder time with it than he was.
After school that day, I asked Maddox how his snack was and he told me that although the teacher struggled to get the enzymes on the spoon, she eventually did it right. I thought to myself, 'Whew, at least they gave him his enzymes.'
After the second day, we worked on our routine and created a checklist to make sure we have a snack (knowing how many enzymes to take), his backpack, change of clothes, and a hug for mom and dad. We go through the checklist to make sure we have everything
for the day before we leave each day.
I hope that by having the routine every morning, he will remember to make sure he has everything he needs every day -- especially his enzymes -- as he continues to get older.
At the school's fall festival, we were able to get a quick status from Maddox's teacher. She told us that Maddox is adjusting great, helps other students who need it, and is very courteous to everyone. I asked how the enzymes were going and she stated
that it's part of their daily routine, just like it's ours. It's a comfort to know that Maddox is being taken care of and his medication administration is right on point. Now to enjoy Saturday morning flag football games and talking about his art
Elaine Ruh, MBA, PHR, SHRM-CP
Mother of a child with CF
Elaine is a mother to her son, Maddox, who was born with cystic fibrosis. After earning her Master of Business Administration (MBA) from Concordia University Wisconsin, she now works in the technology business as a Senior Human Resources Generalist and volunteers on the local Fox Valley Society for Human Resource Management Board of Directors. Elaine recently volunteered as an advocate for the Cystic Fibrosis Foundation and just wrapped up her second year leading a Great Strides team. Elaine lives in Appleton, Wisc., with her husband, Nick, son, Maddox, and their pups, Remy and Lexi. You can follow her on her blog.
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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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