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.
Although it's painful, my commitment to the military in Afghanistan will help me honor my commitment to keeping my son, Cohen -- and the rest of my kids -- healthy.
April 19, 2018
How I Got My Toddler to Wear a Mask
4 Tips for Balancing Motherhood With CF
I walked back to the pool after a run on the treadmill, my Bluetooth® headset still on. My 2-year-old son, Cohen, had just finished a swim lesson and was excitedly enjoying the after-lesson playtime. As he came back to me with a rubber duck
and two inflatable balls, he cut the corner of the pool too short. One leg dropped into the pool, the rest of his little body following rapidly.
I was about a foot closer than the lifeguard and jumped into the pool fully clothed -- complete with the headset. I pulled Cohen back above the water maybe four seconds from his initial splash.
A parent will do anything for her child -- that's why I'm leaving my family.
The Navy has been a part of my life for the past 17 years and I'm being deployed to Afghanistan for at least nine months. It's a bit hard to stomach when your child has cystic fibrosis,
as Cohen, who's now 6 years old, does. I've been the one who has controlled his daily treatments and medication, educated others and myself, and advocated for him. But, my military service comes with medical insurance that is critical for Cohen's care.
So, while I prepare to depart for Afghanistan to provide Cohen with medical coverage, it won't be me that provides him with daily care this year. That's the irony of this whole situation: By leaving my family -- by leaving Cohen -- I will be taking care
I've been deployed twice before, but this will be the first time that I've been deployed since having children. My husband, Jason, and I have four children ages 10, 7, 6, and 2. It can be humbling to realize life can and will go on back
home while I'm away and that my kids -- Cohen, especially -- will be taken care of while I'm gone. So, here are a few ways I've decided to prepare both my family and myself:
Our family is fully committed to building a strong team of support in the community around us. We've taught babysitters how to do Cohen's daily treatments. We have presented to his class about CF, including a show-and-tell during which his classmates
tried on Cohen's vest. We've worked with the school nurse to ensure she can provide back-up
coverage, and his best friend's mom has some of his pills on hand. Cohen and his older siblings know what medications he takes throughout the day and how to run his treatments.
When Cohen was on home IV (intravenous) antibiotics we made sure my parents knew how to administer them. We also asked a retired nurse to assist them while
I was traveling for work and my husband was at his job and couldn't break away. I feel better knowing that we've prepared not only ourselves, but also others close to us to pitch in with Cohen's care.
I'll be on the other side of the world in a war zone. Ensuring that Cohen puts on his vest, that his vitamins are ordered and arrive on time, and that he is actually drinking his daily dose of Miralax® -- those are things I won't be able to
control and shouldn't try to when I need to be focused on what I'm doing elsewhere. One of my favorite prayers says:
“God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”
While in Afghanistan, I'll need to remain focused on the work I'm doing and to be safe. I'll have to accept that what's going on at home is beyond my control.
So, here's the thing … the part of me that likes to be in control realizes there is so much at stake right now. It is so important to keep my son's body as healthy as possible so when advanced treatments like CFTR modulators and gene editing become available to him, Cohen will be in the best health he can.
How much damage could happen from missed treatments or lapses in medications while I'm away? The ugly part of me gets bitter when I think about being away while those on the home front could potentially slack on the daily care causing irreparable damage.
Then, sanity comes back to me and I realize that my husband's love for our son is as strong as my own. I have no choice in this scenario but to trust Cohen's care to Jason, my parents, and the support team we've built up while I'm away.
The night before I deploy, we'll be back at that same swimming pool, this time with family and friends (and lifeguards) to celebrate a year's worth of birthdays that will continue while I'm deployed. We will be with a whole community of caregivers ready
to do what's needed, from jumping into the pool to making sure Cohen takes his enzymes before he eats cake. He's in good hands.
Mother of a child with CF
Lesley is the mom of Cohen, her 6-year-old son born with cystic fibrosis. She grew up on a farm in northern Ohio milking goats and dreamed of living in California. After graduating college, she started her career driving warships. Today, she is a full-time working mother and Navy reserve public affairs officer. She has returned to live in Ohio (no goats) with her husband and four kids. Follow her on Twitter at @lyfsgr8 or her blog Of Grit and Grace.
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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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