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.
Here is my advice to others who have just learned that their partner has a chronic illness.
June 1, 2020
We are committed to listen, learn and continuously improve.
Parenting in the Time of COVID-19
I first met my boyfriend in November 2017 where we worked at Honey Baked Ham. We got each other's numbers and talked on the phone nonstop for a month. It was about two weeks after we started talking that he opened up to me about his CF. The topic was brought up while we were talking about serious issues, and honestly, I did not know how to respond because I was not familiar with the disease. It wasn't long after that conversation that we went out in public for our first date.
Our whole night was special, and I loved every single moment of it. Being with him seemed fine; he did not show any alarming symptoms except for shivering because it was 8 p.m. and 20 degrees!
After a few dates, I became more curious about his condition and decided to hop onto Google. I read everything about cystic fibrosis such as symptoms, treatments, and lifespan. Google was not enough for me, so I asked my mom, a registered nurse, to discuss more details about his illness. After hearing my mom talk, I started to get really anxious because the median age of death was around 30.
My brain felt like I was on a fast rollercoaster ride, and I felt uneasy because there was a chance my boyfriend could die at an early age.
I then called my boyfriend, and as soon as he picked up, I said, “Hey, how come you didn't tell me more about your condition? It says that you could die around age 30.” He seemed surprised like he did not expect me to bring up this topic. He replied, “That won't happen to me, because I have a moderate case of CF.”
The way he responded caught me off guard because of how calm and collected he was. However, I was not calm -- I had so many questions to ask him. I started with, “Why didn't you tell me more about this? CF is a serious condition.”
He took a big sigh and said, “Well, when you're just starting to get to know someone, you don't want to risk messing things up or losing them by telling them, because people don't want to deal with that sort of extra worry and baggage, especially in the beginning of dating and relationships.”
At first, I was upset at him for not telling me sooner, but I eventually got over that. Thinking about his response, I felt special and important, knowing he trusted me enough to tell this significant information.
Later, he went into details about CF and his living conditions while growing up. I was surprised that he opened up to me so much about his life, because we were not officially dating yet. (In the past, I had dated men who were mentally and emotionally abusive.) However, as months passed by, spending time with him was fun and adventurous. Even though there would be times his condition would interfere with our relationship, it did not change how I felt about him. Even today, his CF has not been an issue for me. I see him as the most loving, honest, and funniest person in my life.
If you are considering whether to date someone with CF or another chronic illness, my best advice is to be fearless and take a chance.
However, if you are seeing someone and you are not sure whether you should tell them that you have a chronic illness, ask yourself: Do you see a future with this someone? During my relationship, I asked my partner, “What made you decide to open up to me about your condition?” He said, “The more we talked and got closer to each other, I knew there was something special about you. I could see myself marrying you.”
Now that I think about it today, I learned that I should have waited for him to tell me more details about his CF instead of asking. If you are in a relationship and your significant other has trust issues, just be patient. That is what I wish I would have done. However, finding out that my boyfriend has CF made me think highly of him, because he is strong having to live every single day with this condition and not let it get in his way.
As of today, we are still together and recently decided to get a cute bunny named Custard.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Girlfriend of person with CF
Celeste has been dating her boyfriend, who has CF, for two years. Celeste is a graduate from the University of Houston with a degree in psychology. She met her partner at the company Honey Baked Ham as a seasonal sales associate. Celeste is interested
in discussing her personal experiences living with someone who has CF and her boyfriend’s lifestyle.
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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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