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.
Phthalates (pronounced “THA-lates”) are a group of chemicals used in many products, including drugs, medical supplies, toys, vinyl flooring, wall covering, detergents, lubricating oils, food packaging, cosmetics, and personal care products like soaps and shampoos.
Phthalates help plastic be more flexible. In some medications, such as pancreatic enzymes, phthalates help slow the release of the medicine so it works over a long period of time, making the medicine more effective.
Virtually everyone has some level of phthalates in their bodies. However, there is concern that some, but not all, phthalates might be harmful to people's health.
Some pancreatic enzymes contain phthalates. Pancreatic enzymes help people with cystic fibrosis digest their food. Inside each enzyme capsule are many small beads that contain digestive enzymes. Each bead is covered with a special “enteric coating.” This coating allows the beads to dissolve in the small intestine. The digestive enzymes are then released in the small intestine to help digest food. It is the enteric coating on the beads that may contain phthalates.
Some pancreatic enzymes contain the phthalate hypromellose. There is no medical evidence showing that hypromellose has a toxic effect on people with CF who take enzymes or in the children of women with CF who take enzymes during their pregnancy.
DBP (dibutyl phthalate) and DEHP (di-2-ethylhexyl phthalate), which the U.S. Food and Drug Administration (FDA) recommends not be used in drugs, are not in pancreatic enzymes.
Viokace® is the only enzyme that comes in a tablet form and does not have an enteric coating. Because of this, it can be crushed and used in tube feedings.
The Cystic Fibrosis Foundation's Medical Advisory Council and the FDA state that people with CF should continue to take their enzymes as prescribed by their CF doctor. This is because the benefits of good nutrition outweigh any potential risk from phthalates.
Your treatments are tailored for your health. These enzymes have been used in people with CF for decades with no known problems. Switching enzymes could have a negative impact on your or your child's health.
It is important for you to talk to your CF care team before you or your child stops taking or changes any CF medications. People with CF who stop taking their pancreatic enzymes are at risk of malnutrition.
When people with CF do not take enzymes, they may have poor weight gain; foul-smelling, frequent, loose, or large bowel movements; mucus or oil in the bowel movement; gas or stomach pain; and distention or bloating of the abdomen.
Talk with your CF care team if you have questions about pancreatic enzymes and phthalates. The information you receive from the pharmacy about your enzymes should also contain this information.
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 the 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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