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 a social worker who specializes in helping adults with cystic fibrosis, I realized several years ago that there's a connection between intimacy and sexuality, and the successful management of a daily CF treatment plan. By "partnering with your partner," you can work together to enhance your relationship and minimize the barriers to your care.
Elissa Cohen Engel, LSW, MSW
July 13, 2016
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Several years ago, I had a "lightbulb moment" after talking to a patient with cystic fibrosis about her barriers to regularly completing her airway clearance techniques (ACTs). After discussing it at length, the patient described her feelings of frustration due to being isolated in her room while using her vest and having to spend more time away from her spouse after already working and being apart all day. After strategizing with her about ways to address this, I realized there was a connection between intimacy and sexuality and the successful management of a daily CF treatment plan, and that this was something that needed to be addressed on an ongoing basis.
Sexuality and intimacy are not the same things.
Sexuality is often defined as the sexual acts and behaviors of a person. Intimacy is the intangible sense of closeness and warmth between people, or something that is personal or private. Both are important in a relationship, and when either sexuality or intimacy are impaired, it can have an impact on your self-care. For example, if you and your significant other are arguing frequently, the intimacy and/or sexuality that was shared between you can become strained. This can then lead to exhaustion, anxiety or depression due to the anger and tension at home. This circumstance can make it quite difficult to find the motivation to do all of the necessary treatments to take care of yourself. Similarly, not following prescribed treatment regimens can also lead to sexuality and/or intimacy issues due to anger, fear and distress on the part of the significant other.
One of the ways that people with CF report successfully improving sexuality and/or intimacy in relation to their daily treatments is "partnering with your partner." If you share some of the issues you are facing in managing your day-to-day CF treatment plan, this may allow you to work together to minimize the barriers to your care and enhance your relationship.
Many significant others feel frustrated by not being able to "fix" their loved one or "make the disease easier for them."
Partnering with your partner to help you address barriers can minimize their frustration and provide a different perspective on how to address these issues. The patient I described earlier strategized to have the time she spent doing her vest to be a special, designated time for her and her husband to spend together every day. She brought this to her husband, and they worked on this together. Over time, her ACTs and lung function improved. Working together can certainly improve intimacy as you are both working on a common goal … you!
If you are struggling with issues with sexuality and/or intimacy, you may be unsure how to begin to resolve these concerns. Reaching out to your social worker or another member of your CF care team is a great place to start. Your social worker or care team can offer a safe place to initiate this conversation and can help identify resources to address your concerns. Remember … we are all in this together to help you manage ALL areas of your health.
Elissa Cohen Engel, LSW, MSW
Adult Cystic Fibrosis Social Worker
Adult Cystic Fibrosis Social Worker
Elissa has been working with adults with cystic fibrosis for 12 years at Morristown Medical Center in New Jersey. She has presented at NACFC original research addressing sexuality, intimacy and adherence, and is currently working on publishing data from this research. She looks
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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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