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.
"Moving up." Those are the words I choose to use instead of using the word "died." To me, "moving up" represents the next stage where we go, in another form, in another life. I don't believe that love ends and I never say goodbye.
September 24, 2015
We Go Together: A Post-Transplant Lesson
My daughter Jena moved up to heaven on Monday, December 4, 2006 at 9:57 a.m.
I will never be ok.
Everything around me now has a different meaning than it did before that exact moment in time.
Ironically, now I am able to see beauty in almost everything. I also have lost the capacity to let mindless, thoughtless and trivial things bother my soul. I will never again underestimate the value of a moment, a breath and the power of love.
Mother Nature taught me how.
I can recall looking out my bedroom window in the first few months after Jena moved up. I'd be in bed -- head heavy on my pillow -- vacantly looking outside, staring at the oak branch that hung in my view.
I watched it as it went through the seasons…snow, ice and the sprouting of small buds. Time was a mystery to me as I'd mindlessly watch the buds on the branch grow, bloom into large magnificent green leaves and then slowly turn yellow, orange and burnt red. Eventually they would break free to endure winter once again.
Mother Nature was teaching me the cycle of life and yet I was immobilized in grief, forced to just watch it go by.
It was about five months after Jena moved up that I found myself at the cemetery; lost, searching for her.
It was the first time I had gone to her cemetery. I never had the need and certainly not the desire to “visit” Jena…there. My heart and mind could not and still cannot comprehend that she is alive and well in my heart, yet if I dug down deep enough I could hold her in my arms.
Grieving -- especially a mother's grief -- is so very personal and despicably cruel. Yet, somehow I found myself lost in her cemetery looking for my Jena.
Then I found her.
I had been confused because I was in search of a newly dug rectangular brown mound of dirt with her nameplate. In the impeccable rows of headstones I could see a few fresh mounds of dirt in between the perfectly manicured grass.
What startled me was that Jena was no longer a newly dug mound of dirt; Jena was the manicured grass. She had been there long enough to have life growing above her. In the five months since her burial, the earth had settled and Mother Nature moved forward.
I resentfully questioned how could nature move so effortlessly while my broken heart was still so raw.
Mercifully, seasons change; painfully, life moves forward. Mother Nature taught me that.
She assures us that after winter there is always a spring. We may never see the new life that comes with spring, but we know it comes.
This December it will be nine years since Jena moved up and I've only been to her grave site six times. I still can't get my head and heart to agree, so I just don't go. I've learned not to torment my soul with unanswerable pain.
The same holds true with that oak branch outside my bedroom window.
Over the course of a few years I began to connect depression and grief with that oak branch. I found myself spellbound by that one branch and it wasn't healthy. I mentioned this to Marc and by the next weekend, the branch was cut down.
She seemingly moves with ease as she repeats life's cycle over and over. She is a master at moving forward and I, her eager student.
I've also learned that some unhealthy cycles need to be cut out of your life or they will continue to torment your mind and eventually harden your heart.
I can move forward because pain is not a valid reason for stopping, and a broken heart still beats.
I never need to “visit” Jena because she's alive and well, and lives in my heart…always.
Life is beautiful; you just have to know where to look.
If you forget, just take a look at Mother Nature; she'll show you the way.
This I know for sure.
Mother of an adult and child with CF
Margarete is a public speaker, a freelance writer, and the author of Beyond Breathing and See You at Sunset. But, most importantly, she is a mother of two children who were born with cystic fibrosis: Eric, now 27, and Jena, who “moved
up” to heaven in 2006 at the age of 13. Margarete has been a dedicated volunteer for the Cystic Fibrosis Foundation since 1991. She has served as National Leadership Council Member, National Public Advocacy Co-Chair, and National Volunteer Leadership
Co-Chair, as well as chairing local events. As empty nesters, Margarete and her husband, Marc, continue to raise funds and awareness for the Foundation by doing annual Xtreme Hikes, Golf Events, and galas, all in the hope of one day becoming grandparents
to Eric and his wife, Kourtney’s, children. For more about Margarete, you can visit her website.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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