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 child, I mourned the loss of my sister and brother to cystic fibrosis, so much so that I avoided any and all things that had to do with CF. Last year, a person with CF helped me confront that fear, leading to an unexpected, but cathartic, outpouring of grief.
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We sat at the bar at HōM, a restaurant in Charleston, S.C., with two cold IPAs in front of us and a cluster of Wednesday night booze-seekers nearby. I picked at my tater tots with a fork, hesitant to be truthful with the long-haired, bright-faced woman
next to me.
Earlier that night, Mary Elizabeth and I gathered next door at Ink N Ivy for the Cystic Fibrosis Foundation's networking social for the Charleston's Finest Class of 2018.
A friend nominated me for the award after the Foundation published my blog about my late sister and brother that March. I was honored
when I found out about my nomination, but mostly terrified. If chosen, I knew I'd have to face the disease and the people I spent half of my life dodging out of grief.
That night at the social, the event chair and executive director of the South Carolina Chapter introduced Mary Elizabeth, a person with CF, and invited her to share her story with the class
of 2018. I clenched the glass in my hand and blinked back tears as she acquainted the room full of strangers with her journey and the latest drug that improved her lung function and quality of life.
I snuck off to the bathroom afterward, allowing myself a minute of tears before I rejoined my friend who was talking to Mary Elizabeth. I introduced myself. We hit it off, and after the event, we headed over to HōM.
“I have to admit something,” I said as I set my beer down on the coaster and faced Mary Elizabeth. “I was afraid to introduce myself to you tonight because I knew you had CF. I lost my brother and sister to CF when I was in middle school. You're the first
person with CF that I've talked to since.”
She hugged me, and I cried. “I knew someone in the group had a personal connection to CF,” she said, “but I didn't know it was you. I'm so sorry, April. I don't know what to say. It's not fair. It's not fair that you lost your sister and brother. It's
not fair that I get to be here, and I get to be healthy and they don't.”
I broke down on my way home that night. Grief, sobs, and relief spewed out of me like some sort of agonizing purification. I couldn't see the road, or control my body,
or hear the radio over my howling. I never told Mary Elizabeth about that. I never told her that the 20+ years of mourning tumbled out of me as I drove the wet roads back to my apartment and climbed the stairs to the third floor and folded onto my
bedroom carpet, launching words and tears.
I never told her that in one night, with the softest, kindest nudge, she tipped the wall between me and CF.
Sometime before my induction ceremony for Charleston's Finest, in one of our lengthier phone conversations, my dad and I talked about CF -- about what the CF world was like when Karen and Mike were alive compared to where it is now. He shared more about
his experience with their illness than I think he ever has, at least with me. I didn't know that my sister wanted a lung transplant but was too
weak for the conditioning process required. I didn't know that Mike chose not to have a transplant. It stunned me when I realized I was angry at Mike for that. How could he? How could he not choose something that would buy him more time with us?
And, there it was -- that prick of heartache again. It took weeks of rolling the pain around in my head for me to recognize my selfishness and to realize what Mike didn't want. He didn't want an arduous, painful process for a procedure that, especially
back then, may only buy him a few years at best if it were successful.
Grief shows up again and again -- that's the reality of love and loss.
My big sister would have turned 53 this year. I wonder what our relationship would have been like. I wonder how much we would have in common if I grew into my adult years with her around. I wonder if she would have guided me through my 30s (or, at least,
explain men to me, am I right?).
My dad sends an e-card out on Karen's and Mike's birthdays. Last year's card said, “Dearest Karen Marie, You are 'My Special Angel.' You made the world a better and special place for all who knew and loved you. Missing you, forever. Love, Dad.”
It's true what Mary Elizabeth said -- it's unfair that we lost Karen and Michael. It's unfair that they were robbed of the majority of their lives. It's unfair that they will never benefit from continued advances in research and medicine and therapy.
But, it also doesn't make it any less beautiful that people like Mary Elizabeth prosper from the advances and medicines. It doesn't mean that I can't be grateful and joy-filled because this gorgeous, 20-something woman is thriving. Life holds enough
space for all emotions, even the ones that push and pull on each other.
I drove home from a friend's house after dinner on the night of Karen's 52nd birthday and, coming around the bend into my apartment community, three beautiful deer grazed under the beam of the street lamps. I have lived on this small island just south
of downtown Charleston for seven years. Not once have I seen a deer on James Island. But that night, on my big-hearted, animal-loving sister's birthday, those creatures brought her warm spirit to my doorstep when I needed it most.
I don't know what my future with the CF community looks like and I'm still not ready to dive in, but I'm oh-so-grateful for that July night with Mary Elizabeth, over beers and tots. It wrecked me in the best way and, maybe, I needed to be wrecked before
I could be restored.
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Sister to two individuals with CF
April Zimmerman is a Maryland-born freelance writer, content writer, and blogger currently residing in Charleston, S.C. Recently she was a finalist in the Cystic Fibrosis Foundation's Charleston's Finest Class of 2018. You can read her blog at aprilzimmerman.com and follow her on Instagram and Twitter, at @ape_zim, for all of the daily things.
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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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