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.
Having a baby spend a long time in the NICU is difficult. Here are some things I learned about how to deal with it.
August 17, 2021
My Journey to a Second Lung Transplant
Adjusting to Life With CFRD
Forty-eight hours after my first child Riley's birth, I found myself descending from the front seat of an ambulance and then standing at the NICU front desk to check in for emergency bowel surgery, greeted by smiles, forms to sign that I didn't fully
understand, and a welcome “goodie bag,” amidst the swirling chaos of the hospital wing. It felt as if they were trying to check me in to a resort, but I knew that this would not be a vacation. It felt like an out-of-body experience; I followed the
nurses thoughtlessly and didn't know where my baby was.
My husband Kordan and I were completely naive to the fact that this hospital wing would become our home for the next 58 days and that we would be receiving a diagnosis of cystic fibrosis for our
new beautiful baby girl days later.
As the never-ending days continued to pass, it felt as if we were being robbed of some of life's most special experiences -- bonding with our newborn, bottle or breastfeeding, middle-of-the-night snuggles, and ultimately, having a “typical” and “healthy”
We essentially lived in the NICU 12 hours per day, only going home to sleep. A small curtained area of a noisy room was not exactly the place I wanted to be recovering from birth and coping with emotional trauma. I needed constant reminders to take care
of my physical well-being. Caring friends and family would say, “You should take a self-care day.” I never knew how to respond because nothing sounded appealing if it meant that I would be leaving my new baby alone in the hospital. I was already struggling
enough to even feel like I was her mom. It felt difficult to bond with her being constantly anxious about tugging at the wires incorrectly and never truly feeling like we had any privacy amidst the shared room, visits from staff, and the noise. My
heart sank each time I watched her root for milk and I wasn't allowed to feed her. It took a few weeks to become enamored as a new parent usually is because at times, it felt like she wasn't even mine.
My husband and I spent a lot of time in the initial weeks spontaneously breaking down as we were grieving the CF diagnosis and stresses of NICU life. At times, I found myself behind a closed door in the breast pumping room letting out all of the tears
I tried to hold back when we were in front of the nurses. I resented that our baby was spending more time with her dad since I was pumping every couple hours and it seemed as if they were forming a stronger bond. There were many days we felt very
disconnected as a couple as we were each barely standing on our own two feet.
As strange as it may sound, some of the times we felt most connected as a couple were when we were both on the floor in tears grieving that our perfect baby girl was somehow now chronically ill. In the initial months after diagnosis, we recognized the
pressing need to strengthen our relationship and truly work together. Cystic fibrosis was here to stay and our daughter needed us to be her foundation.
The most accurate description of the NICU is like being on a rollercoaster. There is constant waiting -- waiting for official diagnoses, labs, procedures, recovery, and doctors to call. With the best of teams, it can still be difficult to put all of your
trust into their decisions. You worry not knowing who exactly is watching your baby all night. You feel pained walking out the NICU doors every night looking back knowing you're leaving your baby again to return to an empty crib at home. You wash
your hands until they are cracked and bone dry. You have little privacy to let out your emotions -- there can be an extreme high one day and an extreme low the very next. And, there is so much unknown.
But, know this:
It's OK to ask people to come be with you.
It's also OK to ask to be alone.
It's OK to cry in front of others.
It's OK to take a break from the NICU.
It's OK to ask for help with meals, laundry, and other basic needs.
It's OK to tell it like it is -- no need to sugar coat.
It's OK to lay down boundaries in your work and family life of what you need during your grieving period.
It's OK to speak up to your teams and ask for what you think your baby needs.
It's OK to grieve the loss of a “typical” birth experience and envy others who take their babies home right away.
It's OK (and wonderful!) to seek professional help to cope with the trauma.
And know that while this time feels like the darkest time of your life, that it does get better.
When we finally walked through the hospital doors together to take our daughter home, it felt completely surreal. We were given a new and unexpected path in life and we finally got to start on it. Even though we knew our challenges were not over, all
we wanted in that moment was to see our daughter in our backseat and to wake up to her cries in the night in our own home -- to finally feel like she needed us.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Mother of a child with CF
Jenessa is a mother to her daughter, Riley, who was born with cystic fibrosis. A former special education teacher and dyslexia therapist, Jenessa now stays at home, keeping up with her active toddler. Jenessa will begin participating in volunteer work
with the Utah-Idaho Chapter and the Parent Advisory Council this year. Jenessa lives in northern Utah, with Riley, and her husband, Kordan. Follow her journey with Riley on Instagram.
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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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