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.
How much are you willing to do for a loved one? The answer is simple:
anything and everything, right? We advocate for them, make sacrifices to
be with them and worry about them constantly. Last year I did all of
this, but -- somehow -- still felt pangs of guilt.
January 6, 2017
How I Advocate for Myself In and Out of the Hospital
2017: Our New Year’s Re-Resolutions
It feels righteous, almost macho, to hold myself to a standard of excellence -- to try to move mountains for my wife. There's something fulfilling about striving to do the best -- the impossible -- for our loved ones, but
caregiving is often a marathon and not a sprint. So, if I set an impossible standard as the minimum expectation when caring for my wife, isn't it only a matter of time before I fall short?
For me, guilt came from a feeling of failure and I certainly felt it last year.
My wife Rebecca lived most of last year in the hospital due to end stage cystic fibrosis and resulting
respiratory failure. The doctors made it clear that each day was not promised while she was in a chemically induced coma.
Years earlier, Rebecca told me she wanted me to be by her side in her final moments. It seemed simple enough and I was determined to follow through on this request. Right after she was intubated, I worried that if I stepped out of the room for a minute, I might miss those moments … so I did not budge. On day one, I felt guilty that I needed to use the restroom; on day three, I felt guilty that I needed to check on our cats; on day 105, I felt guilty that I needed a full night of sleep.
That year, I spent New Year's Eve in a recliner, sweating into a plastic gown, while tears and snot made my mask particularly gross as I sat in the corner of ICU room #8. Even in retrospect, I know I would do the same thing again. However, using the bathroom or going home to scoop our cats' poop should not fill me with guilt as if I were a husband who bailed at the first sign of trouble.
When Rebecca came out of the coma six weeks later, it only got harder. She would not sleep very well without me nearby and -- somehow -- I seemed to miss the important moments. I left for lunch one day and returned to find that she'd experienced a panic attack. In the spring, I sat on a hospital bench enjoying a few minutes in the sun while her ventilator tubes popped off and she began suffocating. I had left my job to be with her in the hospital, yet I wasn't there for all of these events.
It was easy to forget the times I was there for her but hard not to feel that I was leaving too early, returning too late and taking too many breaks. I felt
guilty from the moment I stepped out of her room until the second I returned.
As time passed, I learned that there's no way to do everything for someone else all of the time and that I needed to recognize when and how I was needed the most. So, I tried to balance my needs with hers. I generally went home to sleep and I waited until Rebecca was asleep to get my lunch or go for a run. I would discuss her care plan with her team, so I would be there for her
therapy and procedures. The toughest part of this was deciding that things I did for myself were not selfish, but necessary.
The only way I could “move mountains” would be to never take a break. And after six months, it was clear that I needed a few breaks. As helpful as it made me feel, Rebecca didn't need me watching her sleep; she needed me to help her with therapy. I was better able to lift her spirits if I took some time for myself. I was more engaged in our conversations if I exercised. I asked the doctors better questions if I got a good night's sleep. I felt better overall if I did not hold myself to an impossible standard. And though the guilt never seemed to go away completely, I did a better job for Rebecca when I wasn't busy kicking myself in the butt.
We may be willing to move mountains but we don't need to move all of them. If we can give ourselves a break, maybe we'll have a little more to give to our loved ones.
Husband of a woman with CF
Ray Poole is married to Rebecca, who was born with cystic fibrosis. He became involved with the Cystic Fibrosis Foundation and was named “Milwaukee's Finest” in 2013. He is currently a member of the Cincinnati CF Foundation leadership board and serves as the chair for Tomorrow's Leaders. He holds a bachelor's degree in mechanical and materials engineering and a master's in business administration. Ray has recently worked as an engineering manager and product manager in the electrical industry. To find his book, Lessons From a CF Cornerman, TEDx talk, or Hospital Comfort Kit, visit CFcornerman.com.
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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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