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 struggled when I learned that in addition to cystic fibrosis, my daughter also had adrenal insufficiency. I felt anger, sadness, and anxiety. But thankfully, with the support of my husband, family, friends, and care team, we learned how to manage her condition and deal with emergencies.
April 8, 2021
Losing My Sister to CF
How I Avoid Making Different Meals for Each of Our Family Members
“Please come in tomorrow at 9:30,” she said.
“Can you tell me what is going on?” I asked.
“I'm sorry, I can't; but your doctor will be able to talk to you in the morning.”
I hung up, hot tears stinging my eyes, and felt myself going back to that dark day 10 months earlier -- the day we received the call from the pediatrician's office that changed our lives. The call that prompted an unscheduled, after hours visit when
the doctor nervously said the heel prick test came back with a high chance of our daughter, Cecelia, having cystic fibrosis. What was going on? What now? Why does this keep happening? I couldn't
stay here, I had to leave. I found my girlfriend and told her I just got a call and left the Board of Education meeting without explanation. I would tell my principal later when I actually knew what was going on.
Bright and early the next morning, with bags under my eyes and my husband, George, by my side, we heard the words for the first time -- adrenal insufficiency (AI) -- the inability of the adrenal glands to produce cortisol. It's a life-threatening condition
that requires special training and emergency medications. Basically, her fight-or-flight mechanism was affected, so if she got sick or physically hurt, her body didn't have enough cortisol to go into fight mode, and she would not be able to protect
How could this happen? Was it the steroids she had been on for the colds, for her lungs, for her CF?
Why was this happening? Why did this keep happening? First the CF, then the dysphagia [difficulty swallowing], the failure to thrive.
Why, why, why?
Distraught wasn't the word. Angry, sad, scared … My husband and I were doing everything we were supposed to do, but the diagnoses kept coming. And yet, she was still the happiest baby. Hours of treatments, doctor appointments, her laugh was contagious
-- still is.
Our amazing endocrinologist took his time, calmly, patiently telling us what AI was, why she was diagnosed, and what we could expect. We learned right there that day how to give emergency injections in case her body went into crisis. We made an appointment
to bring back family and friends to be trained to give injections and how to recognize when she would need them. We have four children and knew that we needed our tribe to get trained -- if my husband and I needed to leave or even just go out together,
those staying with our children needed to know what to do if a crisis were to happen. They willingly came, eager to support us, but apprehensive about the procedures.
Oh, my goodness, how I was scared. If I wasn't a helicopter mom before, I was now.
So many people would comment on how I needed to let our kids just be -- relax a little, germs build up immunity; let them get hurt, that's how they learn -- fall down and get back up again.
But so many people didn't understand the anxiety I felt worrying that if she fell or got hurt, or caught a bug or virus, that she would end up in the hospital or worse.
Each comment or “joke” from someone I cared about was like a knife stabbing me. I couldn't quite understand why they needed to say what they said. Was it to help calm me down? Didn't they get that I didn't want to feel like this all the time? I would
try to ignore the comments, shrug them off, laugh back, but deep down the anger and sadness, the shame built up. George and I talked frequently about how alone we felt -- that no one understood. He is my rock. He was yesterday, and he will be tomorrow.
He has been alongside me every step of this journey, and I am so thankful for such a supportive partner and daddy for Cecelia.
Over the next three years, her sweet little body would be invaded with germs many times and not be able to produce the cortisol to fight them. We would hear her lethargically cry when we would have to give her the injection to get the life-saving medication
into her before taking her to the ER. It got to the point where her little body would dehydrate so quickly that we needed to call an ambulance to get her to the ER so they could hook her up to an IV immediately. We found that out the hard way when
George had to drive her to the ER while I was at work and he got stuck in traffic on I-84. She was vomiting and almost unconscious -- I have never heard him more scared as he called me, close to tears, and I have never felt more helpless as I sped
to the hospital from work. Our three boys would be traumatized each time, as the medics would come into the house and leave with their mom and their sister -- the worry and fright they would endure with each crisis is something that makes me so sad
-- not knowing when they would see us again, having to go to bed and hoping their sister was OK.
We would sit through hospital admits, watching her have to be stuck over and over with IV needles because they couldn't find viable veins -- waiting, waiting -- trial and error with meds and treatment plans; watching movies; cuddling; trying to keep family
and friends updated on her condition while doing nebulized medications and chest physical therapy; talking with therapists and nurses, residents, and doctors; and trying to figure out what was
going on. I missed a lot of work, but I am so lucky to have a career where I am able to put my family first -- no questions asked. And, our family and friends were always there to help out with our boys -- babysitting, offering to take them and do
fun activities, and providing rides to and from sports so we could be at the hospital. We felt so torn. We hated missing their activities but couldn't leave her alone; obviously she couldn't and wouldn't be alone. Ever.
She cried; I cried.
I cried a lot.
Our team of doctors would come in and save the day each time, creating a treatment plan and a steroid wean, specifically for our girl. She was a little puzzle at times presenting differently each time at clinic, and they worked so hard to help her get
better. Never giving up, always collaborating, and working toward a common goal: getting Cecelia healthy. At times, I felt like they were the only ones I could turn to -- that no one understood but them. Yet, they didn't understand our perspective
as parents; they could understand only from a medical perspective. Nonetheless, our doctors have been amazing. They're truly the best of the best!
Fast forward to today, the COVID-19 pandemic has been going on for a year now. Initially, Cecelia was out of school while the world was shut down. She wasn't
around germs. She was able to stay off steroids and get healthy, get strong, and stay out of the hospital. In June, we found out that she no longer had adrenal insufficiency. Her cortisol levels returned to normal. I cried, but this time they were
happy tears. This pandemic that has taken so much from so many people has been so scary and so traumatic, and yet has given us one positive. It has given my baby the time to heal and get strong, the time to lose a diagnosis and gain some freedom.
Today, she is thriving in kindergarten. Her team of teachers and an amazing nurse, coupled with masks and precautions, are keeping her healthy and for that I am eternally grateful.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Mother of a child with CF
Kara and her husband, George, have lived in Connecticut their entire lives. Together, they have four children -- 3 boys and 1 little lady who lives with cystic fibrosis. Kara is a first grade teacher but took the year off due to the pandemic and the health
concerns so many parents of children with CF face. Kara is a proud baseball, basketball, and soccer Mom and is proud to cheer embarrassingly loud for her children and the other players too! Kara has been involved with her local CF Foundation chapter
since Cecelia was about a month old. She has led her Great Strides team for six years now and most recently became a Congressional Captain for her district, ready to advocate for those who live with CF each day. She looks forward to more exciting
opportunities post COVID-19.
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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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