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.
Tube feeding can be a great way to get the calories and nutrients that you or your child with cystic fibrosis need to gain and maintain a healthy weight. Far from a “last resort,” tube feeds can also relieve the stress of mealtime.
Weight gain can increase your energy, possibly reduce exacerbations of your lung disease and allow you to have better exercise workouts to increase your endurance and strength.
If you or your child with CF are struggling to achieve or maintain a healthy weight, or if you dread mealtime, tube feeding might be the tool you need to meet your nutritional goals. Parents of children with CF often say that tube feeding removes the stress and tension at mealtimes, increases their child's weight faster and helps the family focus on better things, such as strengthening family relationships.
Remember: Tube feedings supplement eating during the day. They don't replace it.
You may want to consider a feeding tube if you have:
For more information on the benefits of using a feeding tube, watch, “Own Your Feeding Tube With Gunnar Esiason” Episode 2, Episode 3, Episode 4 and Episode 5.
Gastrostomy Tube (G-tube): The most common feeding tube is the gastrostomy tube, also called a G-tube or a percutaneous endoscopic gastrostomy (PEG) tube. It is a flexible tube that is inserted directly into the stomach through an incision in your abdomen. This allows nutrition to be delivered directly into your stomach.
“Button” G-tube: After you have healed for a few months from the G-tube placement, your doctor may recommend replacing the tube with a "button." This device is flatter and lies against the skin of your abdomen. It can be placed easily once the G-tube site is healed, usually about 8 to 12 weeks after surgery. The button can be opened for feedings or medications and closed in between. For many, the transition to a button makes tube feedings and care easier and more convenient. Some hospitals may place the button without inserting the G-tube first.
Nasogastric Tube (NG Tube): A nasogastric tube is a thin, flexible tube that goes in your nose, down your throat and into your stomach. An NG tube is the least invasive type of feeding tube because inserting it does not require a surgical incision. These tubes can be inserted each night and then taken out in the morning.
Jejunostomy Tube (J-tube): A jejunostomy tube, also called a J-tube, is inserted through an incision in the abdomen directly into the section of your small intestine called the jejunum. It bypasses the stomach. A J-tube would be used if you cannot tolerate feedings directly into the stomach.
Gastrostomy-Jejunostomy Tube (GJ-tube): A gastrostomy-jejunostomy tube, also called a GJ-tube, is a tube that is inserted through the abdomen into the stomach and then into the jejunum, delivering the feedings directly into the small intestine.
Usually the same supplements that your health care team has prescribed for you to drink can go through the tube. You can use brand-name products and generic supplements that are found over the counter or through your home care or medical equipment company. You can also use specialized tube feeding products depending on your individual needs. Your CF care team can help you pick the tube and the supplement that is right for you.
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