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.
I thought I would never get married -- I didn't want to burden anyone else with my CF. But, after meeting Ramon, we knew we wanted to get married and the only gift we wanted was time.
December 20, 2016
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Measuring cups. Check. Four hand towels. Check. A crockpot. Check. Gift-wrapping? Yes, please.
With a few clicks of a mouse or a quick trip to the store, wedding gift shopping is complete for most guests, an item marked off their to-do list.
But what if newlyweds asked you for more time? Could you fulfill that request?
Time is a precious commodity. Think of how often you hear people say that there simply aren't enough hours in a day. For someone living with cystic fibrosis, the concern goes beyond the hours in a day; instead, it's about the number of days. How many days will there be? How many tomorrows? How much time?
When I was 9 years old, I decided I was never going to get married. That may sound a bit premature for a kid, but I was just grasping my life with CF. Knowing that marriage is a lifelong commitment, it didn't seem fair to burden someone else with my uncertain future. I thought I was making the selfless choice by ensuring I would not get married.
As I grew older, I remained committed to my decision. That is, until I met the person who chose to love me, without hesitation.
Ramon and I met in December 2011; I was 25 years old. Within days, I knew I'd met the person I wanted to be with forever. I just didn't know what our “forever” would entail. Nobody knows what the future will hold, but life with a chronic illness adds another layer of complexity. While we both had (and still have)
anxiety when we think too far into the future, it encouraged us to enjoy the present. Despite our concerns, our love for each other overpowered our fears and we decided on a lifetime together.
On Dec. 20, 2015 -- on the four-year anniversary of the day we met -- Ramon and I tied the knot at a small, casual ceremony. The day was simple yet magical; we didn't need anything fancy as long as we had each other.
After we announced our marriage, our family and friends started inquiring about gift requests. The answer was a no-brainer: we wanted time and the gift of tomorrow. For us and for so many with CF, time means medical advancements and steps toward a cure.
In April 2016, we created a wedding registry of “future memories.” “Future memories” may sound contradictory but we knew we needed more tomorrows to build our life together. Through the Cystic Fibrosis Foundation, we created a
passion fundraising event, a customized page to tell our love story and explain our wish for donations to the Foundation -- a request for more time for Ramon and me. The response was overwhelming.
In three months, we raised more than $25,000 in celebration of our new life together. Our donors ranged from childhood friends to colleagues to complete strangers. We could barely keep up with writing thank-you notes as the donations poured in; we were so grateful for the love and support we received. Ramon and I take comfort knowing that we've received a gift that will live on beyond the two of us. Every donation toward a cure for CF gives us the thing we desire the most: time.
Our linens may not match and we may have to mix things by hand, but our hearts are full of love and a promise for the future.
Adult with CF
Drew graduated from Georgia State University with degrees in communications and journalism. She is a marketer by day and an improviser by night. Drew resides in Atlanta with her husband Ramon and their two dogs, Noodle and Benny. Follow Drew on Twitter.
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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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