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.
Most women with CF have normal hormonal function, reproductive tracts and sexual development. Despite this, the majority of women experience common reproductive health issues associated with CF.
Certain antibiotics and corticosteroids (prednisone), which most women with cystic fibrosis take on a daily basis, have been known to change the normal levels of acidity and bacteria in the vagina. For this reason, women with CF are especially prone to getting fungal vaginitis (also known as thrush or a vaginal yeast infection) caused by a microorganism called Candida albicans.
Symptoms of fungal vaginitis include itching, irritation, discomfort and pain during sex or urination. Men with CF can also experience this type of infection (known as male candidiasis), although this is far less common. They may display symptoms such as sores on the penis, irritation and itching.
Fungal vaginitis can often be treated easily with antifungal creams or, in more severe cases, oral medications. Natural remedies, such as eating yogurt that contains live bacterial cultures, have been thought to potentially help the body re-establish its population of beneficial bacteria. Not all of these remedies have been scientifically proven.
Because fungal vaginitis is so common among women with CF, it is important to schedule annual examinations with your doctor or gynecologist. Getting regularly checked and treated for fungal vaginitis and other infections is critical to your sexual and reproductive health, and can help improve your everyday comfort significantly.
Stress incontinence, or the unexpected release of small amounts of urine during activities like sneezing or coughing, is another primary reproductive health issue experienced by women with CF. One in four women with CF experience it on a regular basis. Frequent coughing -- especially for young women with CF -- can weaken the pelvic floor muscles, as can physical stresses such as childbirth. Clearing your lungs of mucus is an important form of CF treatment, so making sure that your stress incontinence does not go untreated and prevent you from coughing fully is important to your larger CF care.
Kegel exercises can significantly help women with CF firm up the group of muscles that support the bladder. These exercises entail regularly contracting and then relaxing your pelvic floor muscles for up to three seconds. They are recommended to be done in sets of 10 at least three times a day. By working the correct pelvic muscle group, women with CF can help prevent and control stress incontinence while simultaneously increasing their sexual pleasure. Kegel exercises not only provide you with a more long-term solution than panty liners or sanitary napkins for handling stress incontinence, but they can also be a great way to promote your sexual health overall.
Poor nutrition, low body weight and compromised lung function all affect the body's ability to ovulate and menstruate regularly. For this reason, some women with CF may have absent or irregular periods associated with being underweight or malnourished. Young women with CF may also experience delayed puberty or get their first period after many of their friends and peers.
If you are missing periods or ovulating less frequently, it is important for you to talk to your CF care team or dietitian. Together, you can work on addressing any lung or nutrition problems, improving your general health and finding ways to put on weight.
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