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.
Life -- especially when you have cystic fibrosis -- is what you make it. Here is how my CF inspired me to attend law school and helped me get to where I am today.
September 27, 2016
Our Shared Journey
Why It Isn’t About Me
Cystic fibrosis is a scary thing. But as with all scary things, you can either use your fear to grow, learn and find encouragement, or you can run from your fear and let it consume you. I decided at a young age to take the advantages of my CF (yes, I said advantages) and use them for my benefit.
I am a strong believer in making the best of everything life throws at you. When life gives you lemons, make lemonade -- or dream big and create an album titled "Lemonade" like Beyoncé. I've found that by believing in yourself and staying positive through the hospital stays, PICC lines and surgeries that most people with CF have experienced, your life and the differences you make are completely up to you.
I am currently 21 years old and attending the University of Memphis, where I am a proud tiger and sister of Phi Mu. I have not let CF stop me in any way, thus far. I am an upcoming senior majoring in journalism with a concentration in public relations. For the next step of my educational career, I will be attending law school. I do not say I "might" be attending law school, due to the same determination I have about my health. I WILL be healthy and I WILL be a lawyer one day.
Growing up, I was often a patient at Le Bonheur Children's Hospital in Memphis, Tenn., for the typical "tune ups" that most people with CF have on a monthly or yearly basis. Although I often saw children who suffered from similar health issues, I noticed that many of them did not want to go home like I so badly did. I couldn't understand why. All my toys, my dog, my own bedroom and my playroom were at home. My friends could play with me and sleep over at home. I couldn't fathom why they were alone or why their parents couldn't stay with them all the time, like my incredibly loving mother did with me as my dad worked nonstop to provide for us.
As I grew older, my mother explained to me that some children didn't have parents to take them home, while other parents had to work the entire time their child was in the hospital simply to afford the bills. Some children even had homes with mold and mildew that caused their breathing issues to get worse, which was sometimes the reason for their hospital visits in the first place.
As I learned of these extremely unfortunate situations facing such young children, I knew I wanted to help one day -- I just wasn't sure how. Then I watched the movie "Legally Blonde," and as cliché as it sounds, I wanted to be Elle Woods … only I wanted to help the children I had seen at Le Bonheur.
I have always had the type A, take-control personality, which I truly believe has gotten me to where I am today. By staying organized, preparing for anything and having some fun while doing it, CF has taught me what is important in life, such as how to value true friendships and love your family. I truly believe every little step I take is preparing me for my future. As I lie in bed at night and think about my future in law school, I can't help but think that without CF and the experiences its given me, I might not be where I am now. It's hard work, dedication and my refusal to use my CF as an excuse that have brought me this far.
I will leave you with my favorite quote: "How badly you want something dictates how hard you'll work at it." Whether that means working in a routine of medicines and treatments for your CF, giving a voice to children who don't have one or dropping the next hottest album like Beyoncé's "Lemonade," work hard and know that not everyone can handle what you do on a daily basis.
Young adult with CF
Ana is a second-year student at the Mississippi College School of Law. Ana’s passion is family law since she loves to help others through difficult times. In her free time, she enjoys wakeboarding and spending time with her puppy, Conley. Ana tries to take advantage of her CF, which has helped her gain the organizational skills to balance medications and treatments and stay dedicated to ensuring a successful future.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails