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.
Cystic fibrosis took the lives of my sister and brother. I use every opportunity to share their stories and help keep their memories alive.
March 27, 2018
That Time We Went Viral and Where We Actually Are Today
How a G-Tube Unlocked My Son’s Potential
Previously published on aprilzimmerman.com.
Cystic fibrosis. Two words rarely raised in conversation among our family, but the memories and absences they left still nest in the deep, daily parts of our lives.
When I slid from elementary into middle school, I left behind an awkward childhood and unfortunate fifth grade yearbook photo for an even more awkward puberty. My friendships seemed to shift rapidly and I drifted off into average while my former besties
roamed with the coolest kids and the widest bellbottom jeans and the prettiest soccer players. Sixth through eighth grade delivered a weird, formative, sometimes-painful rehearsal before the hormones of high school drama unfolded.
When my sister, Karen, passed away from CF at the age of 29, I was a weird Maryland sixth grader who didn't know real, close, scarring loss. I don't remember the day she died. Not at all. I couldn't tell you the day of the week or whether it rained or
who told me or how hard I cried.
My brother, Michael, died two years later from CF. I remember. I remember coming down the stairs of our two-story duplex. I remember seeing my little brother, Joey, and my mom huddled on our blue carpet in front of the recliner. Joey cried. Mom cried.
Mom told me. I sobbed. I hated CF. I was 13 going on high school and my beloved Mike was gone and I hated CF.
Growing up, the hum and vibration of Karen and Mike's at-home ACTs (airway clearance techniques) and their yearly hospital stays alerted my childhood to illness. My other siblings and I would play around them while they huffed and coughed and their therapy
vests inflated and deflated. I sat on the edge of Mike's hospital bed while a nurse performed rapid -- seemingly violent to my newish eyes -- percussion over his body to loosen mucus. My other older sister, Rachel, could be found wherever Karen was
-- cuddled beside Karen in her favorite recliner, or out at the horse farm learning to ride on Karen's palomino, Jesse James. Sometimes I tagged along. Karen loved animals and always had a menagerie of little paws around the house. She paved her love
for the little creatures firm and smooth in Rachel's heart -- so much that Rachel later attended Virginia Tech for vet school, now owns a veterinary practice, and loves on her own drooly, whiskered tribe at home.
Mike was my buddy. I think he must've known from the get-go that our spirits favored each other. I drove my parents up the walls and through the ceilings with my wild heart and my smart mouth. Mike never seemed overawed by my defiance. I helped myself
to his lap space. I marched into his bedroom to hang out whenever I pleased. I showed up at his softball games and tried to set him up with the occasionally present lady friend. He laughed off my annoying little sister business, probably because he
reveled in antics of his own -- like honking the horn of his blue Toyota all the way through the Harbor Tunnel just to piss off the other drivers.
When we lost Karen and Mike, the gravity of their illness hadn't yet reached my bang-clad-and-hairbrush-toting foresight. The last year of their lives was spent in the hospital more than at home. Still, it never fully registered that their lungs were
failing and their bodies followed. I think our parents shielded us, understandably, from the truth of those last years.
Today, I'm a 32-year-old writer living on a quiet, Atlantic-adjacent island in Charleston, South Carolina. I light a candle and eat a cupcake every year on Karen's and Mike's birthdays. Cupcakes because Mike preferred them to a full-size cake.
I miss them both. I frequently wonder what high school and college and first boyfriends and turning 21 and first careers and first heartbreaks and second careers and turning 30 would've been with my siblings riding alongside and offering life-map routes.
American writer Frederick Buechner wrote, "You can kiss your family and friends goodbye and put miles between you, but at the same time you carry them with you in your heart, your mind, your stomach, because you do not just live in a world but a world lives in you."
Karen and Michael nurture and breathe into my enlarging world daily. And so I tell about them. When people ask how many siblings I have, I tell about them. When someone points to the tattoo on my left wrist, I tell about them. When a friend rides along
in my car and notices the faded gold chain with a Miami Dolphins helmet pendant -- a necklace that Mike wore every day that I ever saw him -- swinging from my rearview mirror, I tell about them.
My brother and sister lived loud and brave and with abundant grace. By sharing their stories, I hope it lifts their voices far and high, and illuminates the lives of those currently living with CF and the lives of the people who love them.
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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