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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
Our goal is to educate policy makers about the needs of people with cystic fibrosis so that they make smart decisions about CF-related research, treatment, and access to care.
We recognize the value of tapping into the expertise that only people with CF and their families have. We invite you to share insights to help improve and develop programs and services that support the daily lives of people with CF.
Our mission is to find a cure for cystic fibrosis and improve the quality of life for those living with the disease. We can't do it alone. Help us add tomorrows by giving today.
In addition to working for a cure, the CF Foundation supports programs and policies to improve the lives of people with CF. Help us by raising awareness of CF, participating in a fundraising event, or volunteering with your local chapter.
Aspergillus species is a fungus that often lives in the airways of adolescents and young adults with cystic fibrosis. When people develop an allergic reaction to Aspergillus, it is called allergic bronchopulmonary aspergillosis.
Most people breathe in Aspergillus spores every day without getting sick. However, people with cystic fibrosis or other diseases that weaken their immune system are at a higher risk of developing health problems due to Aspergillus. Some types of allergic bronchopulmonary aspergillosis (ABPA) are mild and others are very serious.
ABPA affects about 2 to 19 percent of the people with CF. It causes inflammation in the lungs and, if untreated, can cause further scarring and fibrosis.
ABPA is more common in males and adolescents. It is also common in people who:
While the symptoms of ABPA are similar to CF symptoms, if you have ABPA, your health often gets worse without a clear reason. These symptoms include:
The diagnosis of ABPA in people with CF is difficult. It may often take longer because many of the criteria used to diagnose ABPA are the same as the usual symptoms of CF. Below is a list of the criteria:
Treatment for ABPA involves prevention and treatment of acute episodes, or flare-ups. Treatment of ABPA has two parts. Inflammation in the lung is treated with corticosteroids. Fungal colonization is treated with antifungal medicines.
Although there is little proof that antifungal agents are useful in CF patients with ABPA flares, reducing the fungal burden in the respiratory tract may reduce long-term risk of disease progression. Further research is needed.
Oral corticosteroid pills or liquid such as prednisolone (brand names include Pediapred® and Prelone®), prednisone tablets, and methylprednisolone (brand names include Medrol®) tablets have anti-inflammatory effects. The course of medicine is much longer than the short courses used for asthma. An individual with ABPA may use steroids for many weeks and be slowly weaned off of them while symptoms and lung function studies are checked. Once all the symptoms have gone away, the steroids are often stopped.
Side effects of steroids are related to the amount and length of time a person takes them. Side effects of taking corticosteroids may include:
Antifungal medicines like itraconazole (brand names include Sporanox®) reduce the amount of fungus in the lungs. This may lower the chance of the disease getting worse over time. Itraconazole is used one to two times a day for about three to six months, or until all symptoms have gone away. It is better absorbed when taken on an empty stomach. If you are on an acid-reducing medicine, you should take itraconazole with an eight-ounce drink of cola or orange juice to make sure you are able to absorb all of the medicine.
Side effects of taking itraconazole may include:
Watch the webcast below featuring Jeff Wagener, M.D., to learn more about:
Reference to any specific product, process or service does not necessarily constitute or imply its endorsement, recommendation or favoring by the Cystic Fibrosis Foundation. The appearance of external hyperlinks does not constitute endorsement by the Cystic Fibrosis Foundation of the linked websites, or information, products or services contained therein.
Information contained on this site does not cover all possible uses, actions, precautions, side effects or interactions. This site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
FDA-approved drug information is available at www.dailymed.nlm.nih.gov/dailymed.
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