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.
As an infertile man with cystic fibrosis, I never thought my wife and I would be on the cusp of our first pregnancy. Fortunately, over the last 18 months, we've learned a thing or two about navigating the in-vitro fertilization (IVF) process.
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In first grade, I distinctly recall asking my Dad while walking out of school: “Do people HAVE TO get married when they get older?” With some assurance that it wasn't mandatory -- but many people like to -- my curiosity and dread was kicked down the road for another day. At that time, I never thought the day would come.
Today, as a 33-year-old with cystic fibrosis who faced the reality of my CF-related infertility long ago, it's hard to believe that my wife, Ashlee, and I are on the cusp of our first pregnancy. To simply reach the point of (possibly) being pregnant took an 18-month journey with in-vitro fertilization (IVF). And through it, a few lessons have been learned:
Essentially everything about being infertile is a downer. Your friends and loved ones unleash a parade of beautiful children, while asking you when you're going to start. You wonder if you are somehow “less than” others, and you miss out on all the serendipity, mystery, and romanticism of a normal pregnancy landing on your doorstep one morning. But, there is one significant silver lining: You get to choose the best time to start attempting a family of your own. No surprises. No magic conjuring of a brand-new human after the perfect day on a Disney cruise. You intentionally sit down with a parade of doctors, nurses, and administrators, choosing specific dates and times for each baby step.
My wife and I agreed that we both wanted to finish our degrees and secure new jobs before we felt that we were able to better support a third member of our team ... and THEN, we would start family planning. Fortunately, we have been able to do all those things. People say, “There's never a perfect time to have a baby.” But hey, give us this one benefit of infertility, won't you?
Ashlee and I refer to the IVF journey as a roller coaster -- both for the obvious tie-in to there being many ups and downs when trying to scientifically create a human life, but also because you cannot get off the ride until it's over, no matter how it ends. You're in it through the highs, the lows, and the times they stop the ride to perform maintenance as you squirm and run wild with anxiety.
As the procedures, shots, pills, and constant inner-thought monologues unfold across weeks and months, you will need a few people in your corner and a couple of “go-to” activities for when your doubts are particularly strong. Fortunately, I have two distinct driving routes that I like to go down when I need the quiet time with my thoughts, and a couple of family and friends in whom I can confide.
Ashlee and I were given good advice at the outset when we were told that involving too many people could be overwhelming. The well-intentioned, proactive compassion of “How is it going? How can we help?” can drive you bat crazy. So, choose your human outlets wisely. The only people who can really help with what you want (i.e., producing a healthy human child through science) are the folks in the white lab coats. But, if you know someone going through infertility and attempting to start a family, do the things that will help lift their spirits -- like sending funny text messages about farts.
Although Ashlee and I are eagerly awaiting the results of our upcoming transfer procedure, we also know that this may not work. The transfer may fail. We may have a miscarriage … or a stillbirth … and the list goes on. (As you can see, we are already practicing the parental mindset of being in a constant state of worry!)
As a couple, we have had many conversations around the topic, “What's next if this $40,000 attempt at life fails? Do we try IVF again? How many times? Do we adopt? Within the United States or internationally? Is having a biological or adopted child the defining factor of us sharing a meaningful, fulfilling life? Why or why not? Are we better off being the A-list aunt and uncle who also get involved in youth education and programs in our community? Are we overthinking it all? Can we just stop talking about all this and go eat somewhere we like, please?”
If this IVF journey doesn't work, we will be crushed and there will be no hiding it from anyone. But if it succeeds, we'll be over the moon.
Nothing ventured, nothing gained.
But whatever way it works out, I never thought this day would come.
Adult with CF
Tim was diagnosed with cystic fibrosis as an infant and credits his parents and CF care team for providing him with years of phenomenal CF care. He completed his MBA in social entrepreneurship, works full time in the community services sector of state government, and recently released a children's book inspired by his son, Lewis. 14% of the book sales will be donated to the CF Foundation to support the organization that has helped Tim beat his 14-year life expectancy by multiple decades. Tim lives in the Twin Cities of Minnesota, with his wife of nine years, Ashlee, their two sons, Lewis (3) and Arlo (8 months), along with their maltipoo dogs, Bou and Sully. Tim worked for the Minnesota/Dakotas Chapter of the CF Foundation from 2007-2010 as a full-time fundraiser and remains involved in the annual Breath of Life Gala event with the support and participation of family, friends, and colleagues.
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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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