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.
Although my lung transplant was the end of one story, it was also the beginning of another, more difficult story.
May 12, 2016
What’s in My Diaper Bag?
Adjusting to Life After Baby
It will be 14 years ago this summer that I had my lung transplant. And these days, that 14 years feels like a lifetime ago. I can still remember the hours after the surgery, waking up and reaching for a telephone in the middle of the night, trying to call friends, trying to talk to someone, anyone. Not long after the surgery, I can remember my mother asking me how I felt. How I felt?
“I can breathe,” I said.
It wasn't for another decade that I realized how difficult it all was. Before the transplant, doctors and nurses told me how I'd be trading one disease, cystic fibrosis, for another -- lung transplantation. I'd nod politely. I told myself that I'd gladly cut off my arm if I could just catch my breath quickly after walking up a flight of stairs. So the idea of trading CF for anything else seemed trivial.
For me, the transplant itself was easy. I remember laughing to myself the night of the transplant. A lung transplant. It was cute, harmless. I realize now that I was probably in shock. It truly sunk in emotionally a few days later.
Past midnight, I shot up in bed awoken by a jolt of panic. I screamed and started clawing at my chest, trying to rip out the staples. My fingernails were bloody and I poured sweat. It was a panic attack. I was terrified.
The days, months and years after that were a mix of uncertainty, fear, hope, sadness and love. I finished college, started working and writing, and tried to move on with life. Life and death, CF, organ transplantation -- the struggle of it all was always in my head but buried deep down in some dark corner.
Wherever I went, people loved to remind me how lucky I was and how grateful I must be. And I was. All day, every day. But I never needed someone else to remind me of it.
To me, it was simple. I was born with a disease that I didn't want. I had a lung transplant because dying wasn't an option. I was happy to be alive. End of story.
But, of course, it wasn't the end. The emotional confusion and distress took a long time to understand. I began to travel. I started teaching in Europe and Latin America, running to and from nothing in particular, just trying to soak up as much life as I could. Eventually, I fell in love. I learned to laugh and cry and appreciate the details of everyday life. Years later, the transplant, CF and guilt all began to fade away.
For months at a time, I forgot that I was ever sick. No doctor appointments, no hospitals, no panic, no survivor's guilt, no disease, no CF, no transplant. It was like a heavy blanket of fog that lifted. It was this clarity that enabled me to truly reflect on everything that had happened. I wasn't afraid to sit with my thoughts anymore.
When I thought about the transplant process, I began to realize how emotionally harrowing it had been. Memories flooded back: Signing a living will at 19 and leaving my only possession -- a CD collection -- to my younger brother; thinking that I didn't want my older sister, who has CF, to go through all of this too; feeling that it would be better for everyone else if I pushed them away before the transplant in case I didn't make it; not talking to my parents and feeling so selfish and sad to not let them in; being angry, looking for some god to make the pain go away.
It was all of these things that hurt -- not the surgery or rehabilitation. It was the fact that I was 20 years old, scared and thinking the transplant would magically make everything ok. This idea of mental health was the truest, most difficult and constant struggle throughout the decades. And it's my biggest problem with CF. It steals your identity, creeps under your skin, digs in and doesn't let go.
I've known this for quite some time and, today, things are different. I approach CF with understanding and respect. Now, all of those moments are shadows of a memory. Passive and empty.
Today, I breathe in … I breathe out … I move on.
Adult with CF
Andrew Corcoran was diagnosed with cystic fibrosis a few weeks after birth. He has an older sister with CF and one younger brother. His family has been involved with the Foundation for nearly 30 years. He currently writes and teaches in San Diego, Calif.
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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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