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.
My mother's approach to her cystic fibrosis was matter-of-fact, allowing her personality to take center stage.
October 30, 2017
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That morning I ordered waffles, which I almost never do. Funny I can recall the waffles with such clarity (syrup-soaked, dense) and next the walk home along a Chicago street bordered by pudgy brownstones. It was a sunlit April day, the bitterness of Midwest winter finally releasing its grasp. My phone rang -- “book the next flight, come home” -- and what happened after I only know as disconnected flashes in my mind.
A plane's wing tip sears through ink-black sky; a flight attendant asks, “Are you OK?” The question, unanswered, lingers in stale cabin air longer than it should. A car ride to O'Hare, there wasn't enough gas. A gas station, a voicemail.
“Melis, it's Mom. I found the right paint for your bedroom wall. Either the butter yellow or the lemon yellow. Probably the butter, possibly the lemon. I'll send samples soon …"
And a girl, 20-something and sleepless, sits atop the radiator of an empty hospital hallway, staring at taupe walls and colorless tiles patterned on the floor. Maybe a nurse comes by, places a hand on her back. Maybe she's alone.
These details have since been weeded over by the forgetful tendrils of time.
But to me it doesn't matter. They're not the stuff of my mom's legacy anyway. The finale was too cold, clinical, outlined in thin breathing tubes and cadenced with the discordantly bright chirps of medical artillery. Legacy, at least as I see it, implies a great story and you can't tell any great story by starting at its end. So here's mine from the beginning or better yet, here's hers.
To understand my mom, you'd probably have to meet her. She came from a large, tight-knit family, was somewhat tall, forever skinny, with intensely blue eyes and a head of wild curls she could never quite tame. Her demeanor was an amalgam of honeyed optimism, humor and the kind of chronic selflessness you only find in the movies. It pained her to say anything bad about anyone, ever. When a turkey sandwich was placed in front of her at our local diner, she thanked the waitress and meant it.
Growing up in a 1960s world where cystic fibrosis wasn't recognized like the disease is today, nobody suspected anything was amiss. As a young girl her fingernails were oddly spoon-shaped, she'd cough here or there but my mom's early years were marked by relative normalcy.
It was age 18 at Miami University when she got sick, really sick, and doctors pegged her with tuberculosis, prescribing the full cocktail of necessary medications. Only a sweat test administered weeks later by a pulmonary specialist revealed the misdiagnosis; she had CF.
Nothing in the news put her life on hold. She recovered from the bout, graduated college, went to Woodstock wearing a leather-fringed vest and pitched a tent there in the rain.
In her 20s, she worked for my grandfather as bar manager at one of the liquor concessions our family owned in the Broadway theaters splashed across Midtown Manhattan. She met my dad, they fell in love, married, played tennis, traveled. Life was sweet then, a sing-song chorus in the key of Major C. Still a feeling persisted this was just the intermission, something far grander could be found in Act 2.
“I was wrong, Melis. The butter yellow won't work, the wall's too big for such a bright color. By the way, I know you have a date tonight so I won't call again, I'll text. Call me later if you want, I'll wait.”
The other thing you have to realize is that motherhood had been the pièce de résistance of my mom's existence. The first eight years of marriage were spent seeking it, ignoring bleakly delivered admonitions of medical practitioners who shook their heads, “No.”
Undeterred but frustrated after almost a decade of trying, she turned to her brother -- my uncle -- a doctor working at the time for a holistic center in Long Island, NY. He told her about a Chinese woman knowledgeable in ancient herbal remedies and acupuncture, and days later found my mom at the behest of the slight, soft-spoken physician. It would be irresponsible to say this woman did it but for whatever reason, six weeks after my mom started the regimen, she was basking in prenatal bliss.
Pregnancy proved far from easy and she spent the final two months in the hospital short of breath and pneumonia-ridden. My mom would later tell me how she became good friends with the nurses on the floor, (oh my gosh Mom, of course you did) and allegedly, when I was born they all came out from their rooms, stethoscopes waving, and clapped.
It made sense I should grow up a child of the stage; from that very first breath applause heralded me as my mom's finest work of art. Performance -- specifically, singing -- defined my entire adolescence and beyond.
There's a scene in my mind, an audition for The Lion King, on the third floor of a rickety Lower West Side walk-up that smelled of mildew and dancer's sweat. My mom paused, shaky hand on the rail, and ascended the meandering staircase one slow, huff-breathed step at a time. I never made the connection this was a requiem to an ever-debilitating disease; it was truth plainly told and not a warning of what would come.
“Hey, me again. I thought about something else for your date. Make sure you give him a big kiss when you see him. And not one of those quick ones, Melis, a real kiss. Then after, say that was from your mom.”
People ask, “Did you know?”
Well, did I know what? That my mom wasn't like other moms? No, I had no idea. She was more involved in every corner of my life than anyone could be. I was an extension of her very being, a long-awaited gift celebrated with interminable attention upon receipt.
Maybe the lack of awareness on my part was because cystic fibrosis had been more a religion for her than a dilemma, and one whose tenets of treatment were followed with exquisite compliance. She did three, one-hour breathing inhalations a day with the discipline of a disciple, packed a suitcase full of nebulizers that trailed us on every vacation, completed at-home IVs when she'd develop a bad infection. I'd sit in bed with her and watch TV while the medicine went to work. Her left arm was sore from the needle so I didn't touch it. Such was life, the way I always knew.
When she developed diabetes in her 50s that became yet another truism of devout stature. She'd check her sugar before every turkey sandwich, and if we were driving somewhere and she'd start to sweat from low blood sugar, I'd make her pull over to relinquish the wheel to me.
“Melis, it's Mom. I can't get any sleep here, thought you might be up …”
A clock read after midnight (maybe). Most friends and family had gone home until morning but I couldn't leave the small room, surrounded in the half dark by machines that hummed a battle song well beyond defense. Time staggered back and forth then twisted sideways, at last retreating like a senseless coward until there was no time left.
If you want big-picture legacy, here's the final refrain: My mom wasn't someone who lived for 60 years with cystic fibrosis. She was just someone who lived.
“Melis, it's me. How's the studying? The nurses want to see you again. They asked about you tonight so I showed them the article you wrote on watermelon. It feels like I'm not getting any better … What if I don't get better? I know you'd say I'm crazy, I'll get better. I'm trying. And you're right about the paint, the lemon yellow works. Oh, I have to go. Talk later, OK? I'll call you tomorrow.”
Daughter of an adult with CF
Melissa Kandel is a nationally published writer born and raised in Lake Success, NY. She has a B.A. from Columbia University, an M.S. in journalism from Northwestern University. Melissa is an active volunteer for the CF Foundation's Orange County chapter. She lives in Newport Beach, Calif. with her dog, Austin. Reach her on Instagram @melissakandel.
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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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