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.
When my mom used to ask me what I wanted to be when I grew up, I told her that I wanted to be a dad. The journey to fatherhood with cystic fibrosis is full of obstacles, but I would give anything to pass on the traits I've gained from living with this disease to a child of my own.
April 8, 2016
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“What do you want to be when you grow up?” Most responses from a 5-year-old would probably be “a fireman” or “a doctor.” But when my mom asked me this at that age, I responded with, “A dad.”
From a very young age, I was told that having kids of my own would be nearly impossible. But even after I learned this information, I never thought that I may never have children. The alternative simply wasn't an option for me. Even at such a young age, I knew that someday I would have a child of my own to take fishing, bring to baseball games and guide through every aspect of life.
Growing up with CF taught me to be resilient, strong-minded and positive and how to keep pushing through extremely hard times. These are the fundamental traits that were ingrained deep within me from years of dealing with this disease. I would give anything to pass these traits on to a child of my own. There isn't a greater blessing on earth than to have that opportunity, and I think I somehow realized that when my mom asked me that question at the age of 5.
I still do not have children. That is a very long journey that my wife and I are just now starting. There are so many obstacles to overcome and aspects to consider when it comes to deciding to have children.
The biggest obstacle for us is that it can't be done naturally. CF causes infertility in almost 98 percent of males, which makes it nearly impossible to have children the natural way. But through the process of in-vitro fertilization (IVF), a man with CF still has a chance at having biological kids.
IVF is a very lengthy and very expensive process. It is a decision that warrants a ton of thought and discussion with various doctors and fertility specialists. People ask me all the time, “What about adoption?” That is certainly something my wife and I have talked about and actually still want to do. However, the reason it is so important to me to have a biological child of my own is because I have always been told that it wouldn't happen. When you combine that with my passion for having kids since I was one myself, it makes for a recipe of determination, defying the odds and miracles. I hope that, in turn, will inspire others with or without the disease.
Despite these challenges, we are beyond excited to start this process. There have already been a few obstacles to overcome in these early stages.
The biggest obstacle of them all came when I was told that the medications that I will be on (forever) after a double-lung transplant will prevent me from having kids. Some of the medications are dangerous for the baby. After speaking with my doctor, he told me that if I wanted, I could come off my medications for a short period of time to try to have kids.
This is a very dangerous decision to make. Although there are other ways around this if you are informed about your options before a transplant, I didn't find out until it was too late. For example, if a male with CF has made the decision to have kids before a transplant, they can have their sperm frozen in order to have the procedure done at a later date. If I would have been aware of this, that is exactly what I would have done. I hope that in the future, this is a topic of discussion between a transplant recipient and their doctor, because it is an extremely important one.
I can't go back in time and change anything, but I sincerely hope this will help change someone else's journey for the better. All I know right now is that I am excited to one day change dirty diapers, wake up in the middle of the night, read bedtime stories, scare the monsters away and kiss boo-boos. Every time we climb over another hurdle, we are one step closer to screaming with excitement in the delivery room.
Adult with CF
Diagnosed with cystic fibrosis at 3 months old, no one knew what the future held for Kyle, but he never let the disease define him. He is a husband, brother, son, musician, friend, colleague, entrepreneur and fighter, who just so happens to have a life-threatening illness.
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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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