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.
Cystic fibrosis can be a third wheel in a dating relationship. I'm still looking for someone who can love us both.
December 6, 2016
6 Ways to Prepare for the Holidays When You Have CF
How CF Has Impacted My Family Planning Decisions
Cystic fibrosis has always been the priority in my life. Unfortunately, that has held true even in my dating life. Dating can be complex, tricky and exhausting. Add a genetic disease to the mix and it can become impossible at times.
Being single into my late 20s, I've done my fair share of dating while managing the daily life of a person with CF. Of course there have been the normal bumps in the road. You do have to kiss a few frogs before you find Prince Charming, right? But I would be remiss if I didn't acknowledge that CF complicates finding “the one” beyond what the majority of my friends have had to deal with. I can't think of a single stage of any relationship that I've had where this disease hasn't played a major role.
The most common question I get on this topic is, “When do you tell them?” Everyone has different opinions on this, but I have approached it just like I have with any new person coming into my life -- immediately. I've found that the more upfront I am, the more at ease that person is to ask questions. And, of course, I prefer to answer those questions rather than have a person ask Google.
Let's be real, there are always the uncomfortable and extremely awkward questions, but I love having the opportunity to address them. I can't imagine being on the other side -- wondering and not knowing if, or how to ask -- or worse, having those very important questions go unanswered. I've been asked a range of them, too. “Are you going to die in your 30s?” “Is that why you're so thin?” “Oh, so that's why you cough so much.”
The most important thing I've done is to never get offended. A person doesn't know what they don't know and it's on me to inform them as best as I possibly can. It's really helped my relationships grow, and it puts a very honest expectation out there of what it's like to date me.
The biggest difference I've seen in my relationships than those my friends have is how I prioritize. I need balance in my life -- juggling staying healthy, but also doing what makes me happy. I found out early on that I need someone who encourages balance. As important as it is for me to know when to slow down, I need someone who can help me make that call and support me through the times when my life isn't exciting. On the flip side, I need someone who can encourage me to go out and do things while I'm healthy. I have been in relationships where my boyfriend embraced the challenge of CF and would step up when I couldn't. There also were those who couldn't figure out how to support me through the tough times without resenting missing out on something in their life.
Another … fun … experience has been taking a boyfriend to the
doctor with me for the first time or having that boyfriend visit me while I am in the hospital. If you ever want to figure out what someone is made of, do this. It can either be one of the best things for your relationship or it will totally kill it. Either way, you'll know.
Luckily, this has mostly gone well. The ones who have made it this far have already passed a few tests along the way and I felt they were ready to dive in, head first, without a life jacket. This has not been something I've taken lightly. The doctors become a part of your life, they know you, and they ask the uncomfortable questions. Remember that you will have these conversations in front of someone other than your parents.
A boyfriend met my mother for the first time when I went to the hospital. He handled it well, but didn't make it much farther. I've also seen guys really step up to the plate. Once, after waiting hours to be released after an especially tough hospital stay, I was about to lose my mind. Seeing this, my then boyfriend calmly got up and left the room without saying a word. Ten minutes later, we were heading out the door.
Probably the most valuable lesson I have learned is that dating a person with CF isn't for everyone. There is nothing wrong with that. In fact, the faster you figure that out, the more bullets you dodge.
One guy told me straight up that he couldn't date me because of my disease. It hurt and I was upset. But, he did me the biggest favor. I don't want to force a relationship with someone who isn't strong enough to handle my disease or its implications. I didn't waste another second on him. I moved on and tried to find someone who could handle it.
The good ones who really can handle the disease and fully grasp that role are hard to come by. I've also realized that even someone who can embrace the challenge of dating a person with CF isn't necessarily “the one.” It's a balancing act that -- for now -- I'll continue to figure out as I go.
Adult with CF
Jordan was born with cystic fibrosis, but was diagnosed at the age of 13 when her health problems began to surface. Despite this, she attended the University of Arkansas where she graduated with a B.A in advertising and public relations. She has since lived in Dallas, Nashville, Tenn., and Little Rock, Ark. Jordan currently lives in Fayetteville, Ark., where she manages Walmart’s digital media trade desk. She is an advocate for the people living with this disease and actively involved in the Arkansas Chapter.
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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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