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've known for a while that pregnancy isn't an option for me due to complications related to my cystic fibrosis. Now that my husband and I are planning for children, here are some of the thoughts and considerations that impacted our family planning decisions.
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I knew at a young age that pregnancy was not an option for me. Each case of cystic fibrosis is different and affects the body in different ways. While most men with CF are infertile, the ability to conceive, carry a baby to term and to give birth varies widely among females with CF. Some need fertility treatments, many do not need them at all, and for some, pregnancy is not an option. I fall into this last category. Along with my lung issues and arthritis, I've also had multiple hernia repairs, parts of my intestines have been removed and I have had other stomach-related surgeries that prevent my body from carrying a baby.
When I was younger, I never really understood what this meant. It wasn't until I was older and ready to be a mom that it truly hit me. My future husband Andrew and I had discussed my inability to carry children early into our relationship, and he told me that it would just be something we would have to deal with together when the time came.
Once Andrew and I were married, we sat down and had a long conversation about our choices. He has always been very supportive and understanding about the situation, and we worked together to narrow down our options for building a family. The options we are currently looking into include: surrogacy, adoption and fostering. While everyone has their own reasons for the choices they make, I want to share our decisions and the thoughts that led us to them.
For starters, Andrew and I know that we want to experience being parents to an infant. We want to see our child walk and talk for the first time, and as a nanny to an infant for several years, I know that I can handle it. At the same time, however, we both also feel strongly about fostering older children. Since I'll be 32 years old in April, we decided that we should first start by adding a baby to our family. My joints and energy decrease with age and we all know that infants and toddlers require a lot of energy. So, we are currently looking into adopting a newborn or becoming a family via surrogacy. It doesn't matter if our child is genetically related to us, but a lot of the choice will come down to cost and timeline.
Andrew and I also decided that we want to get our feet wet with just one child until we feel ready to add onto our family. Then, we will foster or foster-to-adopt older children and siblings. We hope to become a family of at least four -- with at least two children -- but have decided to take it one step at a time. We have to make sure that I can keep up with my CF treatment routine, which is one aspect of having a family that Andrew worried a lot about at first. My CF (including ten breathing treatments), my career, a house and a family can be a lot for me to juggle. He was worried how we would be able to handle certain issues, such as if I was in the hospital or needed a transplant.
So, we sat down and made a plan: costs, income, schedules and routines. We came up with a long list of questions and discussed each one in depth. This helped us both feel more at ease about the uncertainty of the situation and focus on each step of the process.
Taking the process one step at a time helps -- similar to buying a house. If you think about the whole situation at once it can be nerve-racking or overwhelming. We are focusing on our first step right now: seeing if he is a CF carrier, along with meeting with an adoption, fostering and surrogacy center.
I know that there will still be surprises along the way. Having a family is not an easy process. It will be a long road, but we are beyond ready for this chapter of our lives. We are just so happy and excited to become parents. We cannot wait to welcome our new child into our family in the future!
Adult with CF
Cheriz lives with her husband, Andrew, near Peoria, Ill., where she is a freelance blogger and stay-at-home mom. Cheriz has taken on several volunteer positions with the CF Foundation, including serving on the Partnerships for Sustaining Daily Care Champions Committee, Community Voice, and the Adult Advisory Council. Cheriz and Andrew have a national Great Strides team and co-lead several CF events fundraising in their community. They are foster parents, and in their spare time, they work on their family blog, MoreThanDNA.org, to spread awareness and CF education.
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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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