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.
Not many people can say they had a second chance at life. But, thanks to organ donation, I can. And I'm not just alive -- I'm living. My feet hit the floor every morning because there is no better motivation than clear purpose, which for me is motherhood.
August 17, 2017
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A little more than five years ago I received a lifesaving double lung transplant (We hosted quite the shindig in my honor!). I went from perfectly healthy to transplant in 14 months, so my decline was quick. By most predictions, I had only months to live.
Here's a bit of context: I had the good fortune of knowing what a “good” and easy life was. I had a great childhood. I graduated from two law schools, got married, and shortly thereafter, I got pregnant with my son. I thought I wanted it all. I thought I wanted to be a great wife, homemaker, attorney, and mother. Until I was forced to fight and beg for my life.
I had a 10-month-old son at the time of my transplant, so not living was not an option. While waiting for my donor lungs, I spent countless hours of crying and pleading with whatever higher power there may be to not leave my son without his mother. I also wondered what would my life look like post-transplant.
When people are on their death bed, no one ever wishes they had committed more time to their careers. As I waited for my transplant, I realized I didn't want that either. Not once did I ever plead for more time to get to that big corner office that I was so convinced that I wanted. All I begged for was more time to be my son's mother.
So, yes, my life has changed. Besides physically giving me a new life, my transplant led me to reevaluate what I wanted out of it.
Without my transplant, I wouldn't have (a) decided to use my voice to become an advocate for people who need transplants, or (b) come to appreciate and value my son and motherhood like I do post-transplant. All that pain and suffering had a purpose, and I'm grateful for the perspective it gave me.
What does life mean for me now? It means a lot of things that I didn't anticipate 10 years ago. I love the law and what being an attorney represents, but instead of chasing the highest payday, I now want to use my voice to inspire and fight for those who feel there is no fight left in them. My life now includes bringing awareness to an issue that will literally save lives and change policy in this country. It means that my value isn't measured by the numbers on my income tax return but by what my son will come to appreciate about our relationship.
Although being an advocate and using my voice for the greater good is important to me now, there is no greater role in my life than mother. My goal is for my son to know that I am committed to him and his development 100 percent.
What some may consider inconsequential interactions with their kids, I won't take for granted anymore. I want to spend time with him making arts and crafts for his class or volunteering at his extracurricular activities. I want to be the crazy mother cheering him on at every event or game when I can. And don't worry, he can always hear me when I'm there. See, right before I was transplanted, I could barely muster enough energy and breath to talk, let alone yell and cheer, so I don't take that simple privilege for granted.
Please don't underestimate the power of being an organ donor.
I've heard the common reasons for hesitating, but let's all pause, and try to understand the gravity of such a gift: My donor didn't save the life I was living. Instead, he gave me a chance to live a new and improved life. Just like live theater, my first act lasted almost 31 years, then I had an intermission, where my costume change was a new set of lungs and a change of perspective.
Now I'm living the second act of my life. I haven't written the final act yet, so don't wait for the curtain call anytime soon.
Adult with CF
Fanny Vlahos underwent a double lung transplant in May 2009. She holds degrees in English language and literature and American and Canadian law. Fanny has recently dedicated her time and efforts to inspiring others through her blog, through which she encourages people to embrace their authentic selves and promote organ donation. She is committed to affecting change in health care policy. Born in Canada to Greek immigrant parents, Fanny now lives in the Chicago area with her spouse of nine years and her son, who is truly the love of her life. Follow Fanny on Facebook, and on Twitter.
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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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