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.
At first, it was easy to get my son to do his cystic fibrosis treatments. But as he got older, he started to hide his medications, rather than take them. I finally learned how to get him to see the importance of taking his medications.
March 24, 2021
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I honestly do not know how to begin or what to really say about how I got my son Khaleb to be so involved with his treatments and medications. At times, it can be a blessing and a curse to have such an independent kid at such a young age. Khaleb is 9
years old and has -- for the most part -- been taking his meds and starting his treatments after I just mention it to him.
When Khaleb was born, finding out that he had cystic fibrosis was a blow that knocked us back but not down. I made the rookie mistake of Googling “cystic fibrosis,” and if anyone was watching me at the time, they would have thought that I was auditioning
for a part in “Gone With the Wind.” Seriously, I may have even thrown the back of my hand to my forehead and almost swooned. I had my “as God as my witness” moment when I decided that he may have CF, but CF does not have us.
I made the decision that I was going to raise Khaleb with knowledge of cystic fibrosis and how it can affect his life, but I was not going to allow it to control his life.
As much as I am a fan of John Travolta, I was not going to have my son live like “The Boy in the Plastic Bubble.” I made it my mission to make Khaleb's day-to-day life as normal as possible. When it was time to take meds, I took my meds. I told him, “Look,
Khaleb, Mommy has to take meds so she can be strong and healthy. Do you want to be strong and healthy also?” When he would say yes, I would then explain to him how -- and why -- his medication was different from what I was taking. Some days were not
as easy as asking that question, but soon it became so normal that he did not question me.
When it came to treatments, it was easy to get them completed at first because -- as a baby and toddler -- the hitting on Khaleb's chest, back, and sides would
put him to sleep. This was -- of course -- before he got the vest.
Once he got the vest, the fact that it shook his voice and made him sound like a robot was just so awesome, there was no complaining when it was time for treatments.
Oh, how I miss those days! When Khaleb started going to daycare and spending more time with other kids around his age, he started to realize that not everyone was taking medications every time they ate, needing to do vest treatments, using an inhaler,
or doing breathing treatments. When I got the, “Mom, my friend Jack does not have to take medicine or do treatments. Why do I have to?” I was ready. I was waiting for this day to come, because we all know that our children will have that “wait-a-minute”
moment. So, I took Khaleb, and we sat down with the “Who I Am” book that we were given early on. We had read the book several times before at this point, so he was so familiar with it and he could read it to me. But, now, he could answer my questions
and ask his own questions if he had any.
I started by asking if Khaleb thought he was like anyone in the story. What made him like the character he named? At first, he would always pick the friend Paul because he was a boy, but then he started to notice the pictures and put the words together.
He then started to see that he had more in common with the girl, Patti, who had CF. He then asked why God gave him cystic fibrosis and not someone else. I told him that God knew that he would be able to give cystic fibrosis a run for its money. He
looked at me and asked if he could have the money cystic fibrosis had without running.
Soon after this conversation, Khaleb started to hide his medication. He was doing his treatments because there is no way to fake using the vest or doing airway clearance techniques.
When I would give him his meds to take, he would pretend to take them and then hide them. This was his attempt to control what was going on. I would see a pill here or there, but it was never a large enough amount to make me think that Khaleb was
not taking his meds.
When Khaleb started to have greasy stools and passing more room-clearing gas, I would ask him if he was taking his medications.
He would always say yes. Fast forward to me doing a full deep clean of the house where I moved the freezer away from the wall to clean behind it, and I find the jackpot of pills that Khaleb had been stashing there. He had about three different hiding
places that I discovered.
I did not immediately let on that I had found his stashes. I waited and started asking him questions about how he was feeling and what was going on with him. He finally admitted to having stomach cramps and that he had been having accidents where he needed to change clothes because he passed oily gas. I asked him if he knew why this was happening, and he said he did not know. I asked him if he would like me to explain why this was happening, and
he said yes. I pulled out the Ziploc bag of medication that I found and told him that had he been taking his meds like he said he was, those things would not happen.
I took that moment to break down each medication Khaleb was taking and educate him on what each medicine did and what would happen if he did not take it.
By the end of our conversation, he had a full understanding of all his medications. If he did not know the name of the medication, he could describe it and knew why he was taking it. I told him that I am his Mommy and I can help him fight cystic fibrosis
as much as I can, but I will never know how it feels to have it. I do not know how it feels to pass gas that can clear a room or have stool that can stain my clothes. I explained that since he knows how that feels and he does not like how he feels
when it happens, then he needs to make sure that he takes his medications so those feelings do not happen again.
Explaining that and ruining his favorite pair of Batman underwear with a greasy stool episode appears to have been enough to get Khaleb to make sure that if I don't mention his meds, he will say, “Umm, Mom, I need my medicine.”
Interested in sharing your story? The CF Community Blog wants to hear from you.
Mother of a child with CF
In addition to being the mother of Khaleb who has cystic fibrosis, Lathronia is a graduate of Emory & Henry College in Emory, Va. A lover of music, movies, and books, she usually can connect a line or clip from one of these into whatever she is sharing.
Lathronia is a member of the CF Parent Advisory Council at Medical University of South Carolina Health Shawn Jenkins Children’s Hospital. Lathronia and Khaleb reside in North Charleston, S.C., where they enjoy the salty air from the beach. Feel free
to reach out to her at Lathroniajefferson@icloud.com.
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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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