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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
It may seem odd to some, but I'm finding a bittersweet pleasure in taking care of my aging parents. As a 45-year-old woman with cystic fibrosis, I feel lucky to be alive and able to repay them for years of doctor visits and at-home treatments.
May 15, 2019
Finding a Place in the CF Community
My Three Rules for Dating With CF
We are not staying alive to be happy. We are staying alive so that we can feel the full range of human emotions and experiences. I've paraphrased, but essentially that is what my peer mentee said when I told her that I was struggling to write this blog post about the wonder that is becoming old enough to take care of my aging parents despite my cystic fibrosis.
My mother has Parkinson's disease and Parkinson's dementia. The one thing she hasn't lost is her sharp British humor. She has aphasia and can barely speak, but when she does, she makes hilariously witty remarks. “A likely story,” has been her go-to phrase for a long time, and she uses it now.
“I'm going to wipe your bottom now, Mom,” I say.
“A likely story,” she quips, as if I might have other plans.
But that's the thing -- I'm glad to be here, cleaning up poop, helping her blow her nose, hurting my back trying to move her from place to place. It's not glamorous, and it can be physically difficult. I know it's emotionally wrenching for her every time she frets about the people she sees in her hallucinations -- “Why are they here? What are they doing?” I can't calm her fears most of the time.
My mom, if you'll pardon me, was the Best Mom in the World. Is, I should say, I guess. She was the lightbulb we moths flew around, the woman with our whole lives penciled onto the calendar, the driver, the counselor, the British import who knew more American history than we did. She was a bookkeeper, journalist, editor, and photographer and smart as a whip.
Parkinson's, and in particular dementia, has robbed her of speech, reading, understanding of the sounds she hears, and most of her memory. To think that 10 years ago she was researching and writing a book is heartbreaking. To see her rebuff Dad's friendly gestures after a 52-year-long, happy marriage is crushing. When she looks at me and says, “Who are you?” I have to remind myself that it's the disease talking.
Who am I? Well, I am the one who was always the patient. When nurses and caregivers came to the house, it was for me. I sit in the conferences we hold with the nurse and have to remind myself that it's not about me anymore.
I go to clinic, and I'm doing relatively well. A likely story, I know!
I grew up in the 1970s and '80s being sure I would die before the millennium. To have hosted 19 more years in this body is a miracle. I will soon be 45, and although I don't have many of my cohort left who know what it's like to live with CF at this age, I know a vast world of 45-year-olds taking care of their parents. Everyone I know has a parent or two who needs more care than they once did. My dad has a significant loss of short-term memory, and although he is fairly healthy, I am his caregiver too.
They saw me through a childhood of cystic fibrosis, and now I wait at doctors' offices for them. She wiped my butt as a baby, and I do it for her now. She stroked my hand and told me I was doing OK, and now I do the same for her. I see that parallel; I almost enjoy it.
The universe has given me a chance to repay what I thought I never would.
Being in my 40s has been wonderful. I love the confidence that has come with age (I got a tattoo!). I love that I'm in my 20th year of marriage (it just gets better and better!). I love seeing my niece and nephews growing up and becoming teenagers (teenagers!!).
But taking care of Mom reminds me that the Buddha talked about the “10,000 joys and 10,000 sorrows” of life. Mom-care covers both of those, and we weren't put on this Earth to be happy. We all want to live long enough to feel the full range of human experience. I want to be here for the whole gamut, A to Z. Bring it on!
Eliza's mother, Judith Callard, died on May 5th of Parkinson's Dementia.
Join the conversation on Facebook.
Adult with CF
A writer and meditator, Eliza was a reporter decades ago but now focuses on poetry. She is a CF peer mentor through CF Peer Connect and acts in various other volunteer roles. In addition to posting her publications list and upcoming poetry readings, Eliza answers emails she gets through the contact page of her website elizacallard.com. She is from Philly, really does love soft pretzels with gobs of yellow mustard, and always roots, roots, roots for the Phillies.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails