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.
Retirement is supposed to be for the elderly, for those who have put in 40+ years of the 9 to 5 grind. But for the CF retiree, life is not as glamorous as it seems to those on the other side.
August 13, 2015
CF and College: The Secret to Getting it All Done
10 Things I Wish I Knew Before Coming to College
There comes a time in every adult's life when they can no longer work. Usually this happens when people are in their sixties and seventies. For many people with cystic fibrosis, “retirement” happens long before that.
I stopped working when I was 29. It was a decision I had been wrestling with for a while, but I finally did it. Nearly six years later, I do not regret my decision, but every day it is a struggle.
Here is the good, the bad and the ugly of not working with CF. First, the bad.
There are many misconceptions to deal with when you become disabled at a young age. I look healthy and capable of working, so people assume I must be lazy. Or they assume my husband is rich. Of course my house must be spotless, etc., because I can cook and clean all day.
These assumptions, coupled with comments like, "you are so lucky you can stay home all day" add to the struggle.
What people don't understand is that the reason we aren't working isn't because we don't want to. It's because we can't.
We lose a lot that people who do work take for granted.
Having co-workers to talk to every day, making work friends and going to functions are a few highlights of the job I miss.
After I stopped working, it depressed me to watch on Facebook as my former colleagues earned promotions and took new jobs.
Not working also takes away financial independence. I am on SSDI and while I am able to contribute to my family a little, it is still disheartening to know that this alone would not support me. I am dependent on my husband for support.
For the first month or even year of not working, there was a sort of vacation feel to my life.
There was no alarm clock jolting me out of bed at 5:30 a.m. to do treatments. I could wake up at 11 a.m. and leisurely begin my day. Being able to do whatever I wanted was great at first.
Then reality kicked in. And boredom. I found myself sitting around not knowing what to do with myself. There were only so many TV shows to watch, or books to read before I got tired of doing that day after day.
Even now, there are some weeks where I only leave my house once during the entire work week. My pajamas have become my office attire, and some days the only person I talk to out loud (until my husband comes home) is my dog.
But not working has its perks, too. I was able to go back to school to get my master's degree in history and graduated in 2014.
Also, I expanded my hobbies. I bake bread, crochet and sew pretty much daily. I'm learning to knit. I have a routine to my day. I exercise, and more and more, put on real clothes, and sometimes even mascara.
I never thought I'd enjoy being a housewife, but in my “retirement” years, Donna Reed has become my idol. And the best part? I get to visit my family and spoil my niece and nephews whenever I feel like it. I can travel to visit them, 300 miles away without worrying about vacation time and missed deadlines.
Retirement is supposed to be for the elderly, for those who have put in 40+ years of the 9 to 5 grind. It is supposed to be visiting grandkids and traveling with your spouse in a Winnebago to all 48 continental states.
For the CF retiree, life is not as glamorous as it seems to those on the other side. We have to retire without our spouses and our friends. But we make it work, we make it ours and we dream of the day we can come out of retirement and join the workforce once again.
Adult with CF
Amy was diagnosed with cystic fibrosis in 1987 at the age of 6. She lives outside of Boston with her husband and two stepchildren. Amy earned her B.S. in interior design and her M.A. in history and has a passion for both. Although unable to work, she concentrates on maintaining her health and expanding her crafting skills. She also has her own blog about life with CF, Mastering the Art of Breathing.
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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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