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.
As a new mom, it can be difficult to balance motherhood with maintaining your cystic fibrosis care. Here are four tips that made my journey as a new mom with CF a little easier.
April 17, 2018
Trusting My Community With the Ultimate: My Son’s Care
What Do I Do After VLC Is Over? Keep Sharing My CF Story
When you are a new mom like I am, everyone wants to offer advice and share their personal experience of motherhood.
Now that our son, Fenn, is six months old, I will share some tips of my own that made my journey as a new mom with cystic fibrosis go relatively smoothly.
It is important to gather a group of trusted individuals and ask them to lend a hand for the first couple weeks by washing dishes, doing laundry, dropping off meals and groceries, or just holding your baby while you nap or have some alone time. It's never
easy to ask for help -- and is something I am still learning to do myself -- but it can make a big difference between enjoying and “just surviving” the newborn period (and beyond).
Frankly, caring for an infant and breastfeeding like I am is physically and mentally demanding (AKA, it's exhausting) -- even for individuals with perfect lungs and
working pancreases. It is so easy to forget about yourself and your wellbeing when your primary focus is keeping your baby healthy and happy.
The way I see it, keeping up with my treatments, eating well,
staying hydrated, and resting my body are all ways for me to still actively take care of my son. I want to be here to share in all his milestones, and I use that motivation to make self-care a priority each and every day.
It's not always easy, but my little boy deserves me at my best. I made it this far -- I'm a mommy! So, why overlook my health now when it matters most?
By following his cues, we have developed a routine that looks something like this:
A routine has helped encourage me to stick with my treatments and medications by prioritizing my health as something that needs time and attention in our day. It has also brought a better balance to my busy role as both a mom and patient.
I know that our routine will evolve and change as he ages or as I experience an exacerbation and need extra time to care for myself, but it will keep us on the right track. Plus, there's always time for hugs and kisses!
I learned early on that I needed to be kind to myself. Releasing certain expectations that I had for myself and appreciating that my son was happy, healthy, and loved made me a better mother. So what if my husband loads the baby into the car to spare
me the extra energy and breathlessness? No big deal.
This winter, we didn't attend any baby story times at the local library during cold and flu season like I had imagined we would. But it's okay -- we still have spring and summer. And some days, I need to bring toys to bed and rest while my baby plays next
to me. More moments for cuddles! Those things do not make me a bad mom.
If you are struggling to breastfeed while maintaining your health, it's okay to stop. Likewise, if you are breastfeeding and feel an exacerbation coming, it's okay to treat with IVs without feeling guilty like I did. (Obviously, make a plan with your physician
to use medications that are breastfeeding-friendly).
You have to do what's best for your family, your baby, and yourself, and sometimes, that's a bit detached from the “normal.” Someone once told me that motherhood is a marathon, not a sprint. Be kind to yourself and you'll enjoy every step.
Adult with CF
Janeil is a Cleveland native who was diagnosed with cystic fibrosis at the age of 4. She graduated from Case Western Reserve University with a degree in anthropology and continues to complete a master's in public health. Janeil serves on the Quality Improvement Team at her local CF clinic and enjoys sharing the daily experiences of a 20-something-year-old with CF in her lifestyle blog Flowerlungs. In her free time, she enjoys drinking coffee, arranging flowers, and spending time with her husband, cat, and family. Follow @neiljaggers on Instagram and Janeil Jaggers Whitworth on Facebook.
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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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