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.
My experience with complications after lung transplantation led me to join a group that is trying to make it better.
June 15, 2017
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I was mildly affected with CF growing up. It rarely interfered with me having a “normal” childhood (I HATE that word, by the way). For me, illness does not equal weakness, but I know how society treats those who are ill.
I am not "that sick girl with CF." Or, “that girl who had a lung transplant.” Nope. I am Fanny. I am a daughter, sister, friend, attorney, volunteer, wife and -- most important -- a mother, who happens to have a mutated gene. Got it?!
Everything was hunky-dory until the end of my second trimester of pregnancy. Then, the proverbial floor fell out from under me, and I went from a happy, healthy pregnant woman to receiving a double lung transplant in 14 months.
I was going through my own emotional and spiritual hell, but my medical team had a game plan. They took (and continue to take) great care of me. I was transplanted and my new life began. But whoa, whoa … not without complications.
Seven months post-transplant I started experiencing excruciating gastrointestinal (GI) pain. And, I really could go on for pages (should I?!) but here's the gist of it all: the immunosuppressant drugs (drugs that prevent rejection) that I was taking were SO toxic that they damn near killed me. Months of weekly labs, procedures, appointments, tests, and so many drugs resulted in me being misdiagnosed with Crohn's disease. Nothing was working, so they kept increasing drug doses. The pain kept getting worse, so I became my own advocate and sought out one of the most renowned GI physicians in the nation.
Guess what? I didn't have Crohn's. I had massive, baseball-size ulcers that were literally eating away my insides. I had surgeries, the first to remove two-thirds of my stomach; the second to remove parts of my colon, large and small intestines, and appendix. I didn't eat food for seven months. After very lengthy hospital stays, misdiagnoses, drugs, such invasive tests that my body was beginning to shut down at the mere prep for those tests, having lost all of my hair, being told I may not eat again, or I'd need to wear a colostomy bag for the rest of my life, I made a full recovery. From the beginning of my gut pain to having fully recovered from my surgeries was about 14 months. Should I go to Vegas and put all my money on the number 14?!
Going through the respiratory issues and enduring a lung transplant was such a horrifying time in my life. But, we had a game plan. My medical team was on top of my infections, my lung functions, my vitals, etc. If I died while waiting, at least it wouldn't have been a surprise to anyone. With the GI complications though, all bets were off. No one knew what the hell to do with me, initially. No one could compile a playbook because we don't know enough about the lung transplantation process and the complications that could follow.
The uncertainty of it all was what made that time way more difficult for me to handle than the respiratory situation. Sure, I'm a control freak and maybe that's what made the unknown so terrifying. I had no idea what was going to happen to me for several months and neither did my medical team. That was my hell. I needed to bounce back, so here I am. I have a little boy who is my everything, and he needs to know that I fought through it all just because he deserves to have a mom.
And that brings me full circle to my purpose: I want to use my voice to help others. There's no turning back now, so I jumped right in. I am currently involved with the CF Foundation and serving on a Steering Committee to create practices to guide CF lung transplantation. The hope is to spare others from some of the uncertainties that I faced. I am honored and so excited to work with such esteemed medical professionals on such a venture.
So, there you have it: that's my truth. What's yours?
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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