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.
Since the loss of my sister to cystic fibrosis, grief has hit me in waves. Sometimes it feels as though I can't breathe. Despite this, I have been able to function and keep going. That is what Claire would have wanted me to do.
April 8, 2021
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“As for grief, you'll find it comes in waves. The waves never stop coming, and, somehow, you don't really want them to. But you will learn that you'll survive them. And other waves will come. And you'll survive them, too. If you're lucky, you'll have lots of scars from lots of love. And lots of shipwrecks.” - Anonymous
12:44 p.m. A time that is permanently singed into my memory. A stinging pain that overcomes me every time I see it on the clock. A burning scar. My heart skips a beat. A physical ache. A moment of breathlessness. I still hear the nurse's voice so clearly
in my head. “Time of death: 12:44pm.”
It's been 244 days since I lost her. 244 days since a piece of me left with her. My little sister, Claire. My baby sister. I knew it would come, but I wasn't ready. I know now that I never could have been ready. Never could have been fully prepared
for the anguish that comes with loss. The deep physical pain I feel when I remember that she's really gone. I've never felt so wounded. And yet, I'm still standing. How is that possible?
Having a sister with a terminal illness has always been mentally challenging for me. Throughout my life, any time I told someone that my sister had cystic fibrosis, the response was always “I'm so sorry.” I never understood that. Of course, I appreciated
the words. But I was never able to fully process that “terminal” meant death. An unavoidable fate. An inevitable conclusion.
To me, Claire was infinite.
There was nothing that could stop her. I saw her distress and suffering and pain first-hand. And it was torturous. But she always pulled through. She always fought like hell. She had cheated death before. She'll cheat death again, I thought. I could never
consider the alternative. My mind wouldn't allow me to. We're so close to a cure. One day she'd be freed from the grips of this disease. I couldn't call it hope, because I knew it. I was sure of it. Until I wasn't.
They say that grief comes in waves, and I've always wondered what that meant. Now I know. And there is no better way to describe it.
At first, you're lost in a fog. A haze of denial. Like you're trapped inside of a lucid dream. And all the while, you feel the wave brewing. Little stings of pain churning in your heart. Little moments when you're able to touch reality, but only for a
second. Your body won't allow you to. Your mind won't allow you to.
You cling to photos, videos, and songs -- things that keep her alive. You're able to block out the world and the future. You're able to just be in that moment with her. Like nothing else exists. But the wave is still brewing, even faster than before.
Then, the tidal wave comes. It's so unexpected. It crashes around you, and you're unsure if you'll make it out alive. Drowning in the weight of reality. I never expected the physical pain. The deepest feeling of sorrow, like you got the wind knocked out
of you. You can't catch your breath.
Every memory and every word and every reminder comes flooding around you. And all you can do is try your best to survive the shipwreck. All you can do is float.
In the beginning, the waves crashed hard and without mercy. I wondered if I'd ever be myself again. I couldn't talk to people. I couldn't get out of bed. I questioned my faith. How could God do this to us? To her? A 24-year battle to breathe, to live.
For what? Why her? She was too good for this. She didn't deserve this. This unavoidable fate. This inevitable conclusion.
I was so angry. All of the wasted suffering. I dreaded the future. All the moments that should be so sweet -- family vacations, getting married, having kids. It all seemed
so bitter. I never pictured myself being truly happy again. A constant stream of waves crashing into me. I couldn't catch my breath. But somehow, as time moves on, the waves become less frequent. They still come, but further apart.
You can function. You can breathe. In some moments I wondered if it was possible to keep going. But you just do. You just keep floating. And that's what she would want.
I still see her in my dreams. It's always the same scenario. She and I sitting, just talking. It's not a moment from the past but a moment from the present. A few months after she passed away, I dreamed that we were hugging. The dream lasted a while,
and all we did was hug. I cried into her shoulder. But she wasn't crying. She was comforting me, saying that “everything is going to be OK.” Just like what she would do if she were here. Always reassuring me that no matter the circumstance, I was
going to be OK. It was so real. My mom, dad, brother, and countless friends of hers have had the same dream. The same scenario. They are sitting down, in the present, just talking.
Last week, in a dream, I told her that I missed her. She responded, “I miss you, too. But we can talk to each other like this.” I woke up, tears streaming down my face. I no longer question my faith. I no longer question where she is. I just know.
Moments like this trigger the waves. But I'm thankful for them. Moments like this serve as a reminder for me.
Claire is infinite.
And she always will be. I know the waves will never stop coming, and, somehow, I don't want them to. Because it keeps our love alive. Other waves will come, and I'll survive them, too. And if I'm lucky, I'll have lots of scars from lots of love. And lots
Interested in sharing your story? The CF Community Blog wants to hear from you.
Sister of an adult with CF
Kendall is the older sister of Claire, who lost her 24-year battle with cystic fibrosis in June 2020. A graduate of Louisiana State University, Kendall now works as chief operating officer for her family’s company in her hometown of Baton Rouge, La. She
is an active philanthropist in her community and spends her free time doing what she loves most -- fundraising for cystic fibrosis. In 2020, Kendall was named the top fundraiser nationwide for Capital City’s Finest and was also selected as the Louisiana
Tomorrow’s Leader award recipient by the CF Foundation. Follow her blog, Facebook, or 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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