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.
Your Care Team
Since cystic fibrosis is a complex disease, it requires a team approach with you or your child at the center. Your CF care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
The CF care team approach means that health care professionals work together in partnership with you to provide comprehensive and high quality care for you or your child.
Ready to meet your team? Let's start with the most important member.
You are an important member of your or your child's CF care team. While you depend on your CF care team for essential guidance on your medical care, you are the expert in the daily management of your CF.
There is a lot that you and your CF care team can do together to help you maintain your health with CF. As an active member on your own care team, you can help make sure that your treatment plan and comprehensive CF care reflects your personal needs and goals so that you can live a longer and healthier life.
Watch the webcast below to hear Michael Boyle, M.D., FCCP, discuss:
Watch the webcast below featuring Peter Moygazel, M.D., Ph.D., to learn more about the pediatric CF care team, including:
The following health care professionals are part of your CF care team at a typical CF care center.
CF nurses specialize in CF care and fill a variety of nursing roles in the CF care center setting. At many CF care centers, your CF nurse may also be the program or care center coordinator. The coordinator works with all members on the CF care team to ensure that the CF program runs smoothly, which can include participating in quality improvement (QI) initiatives and making sure that best practice
care guidelines are properly implemented at your CF care center.
Your CF nurse is your primary contact and is there to address your concerns, answer questions or direct you to the right CF care team member when discussing a specific part of your treatment plan. CF nurses also have the primary responsibility of providing CF education at initial diagnosis and throughout life.
If you're not sure who the correct person is to discuss a concern or answer a particular question, start with your CF nurse.
At a glance, your CF nurse:
The nurses at your care center may include a nurse practitioner (NP) and or a clinical nurse specialist (CNS). Your team may also include a physician assistant (PA), who like an NP, has additional education and training in order to perform physical examinations and prescribe medications and treatments.
Watch the webcast below to learn more about your CF nurse, including:
The medical doctor at your care center is an expert in CF care and is often the director for the CF program. He or she is likely trained as a pulmonologist to diagnose and treat lung diseases and will work with you, your family and the other members of your care team to develop an individualized CF medical plan. This means the plan is based on your medical test results, changes to your health status, new available therapies and your personal goals.
CF is a complex disease that affects many parts of the body differently as you age into adulthood. In order to provide you with comprehensive care based on current medical best practices, your CF doctor is responsible for staying on top of the latest CF care guidelines, trends in patient outcomes and new medications and therapies. He or she also collaborates with other health care professionals, including your primary care doctor, when assessing the details and outcomes of your care so that your overall health is at its best.
Many CF doctors also participate in quality improvement (QI) initiatives to learn about ways to improve your care or teach other health care professionals and the public on ways to deliver quality care for people with CF. Some doctors may also conduct research through
clinical trials to help bring about new CF treatments and therapies.
At a glance, your CF doctor:
We know that higher body weight promotes better lung function and that good nutrition is essential for building and maintaining a healthy body weight. Registered dietitians are trained to assess your daily food intake, growth and your overall nutritional status. They help you work towards your optimal body weight so that you have the calories and nutrients needed to fight off lung infections and maintain lung function.
With your personal goals and lifestyle in mind, your CF dietitian can teach you and your family how to adjust your eating habits, recommend dietary supplements and vitamins and adjust your enzyme intake. They may also suggest tube feeding as a healthy option to help you meet your nutritional goals if you can't get what you need from eating and drinking alone.
Your CF dietitian would also help you
manage CF-related complications such as CF-related diabetes (CFRD) and bone diseases like osteoporosis.
At a glance, your CF dietitian:
Maintaining your health by taking your medications and doing your therapies can be challenging and affect how you live your life. You may feel overwhelmed trying to keep up with school, work or your relationships, which could have an emotional impact. This is where the social worker on your CF care team can help.
Social workers can provide direct guidance to help you
navigate your health insurance coverage, make tough decisions about school or the next steps in your career. They can also refer you to specialists so you can get the help you need.
At a glance, your CF social worker:
Your social worker may refer you to the Cystic Fibrosis Foundation Compass for additional assistance. Compass is a free, personalized service that can help you with insurance, financial, legal and other issues. Dedicated Compass case managers can assist in coordinating benefits or providing information about benefits offered under your plans. Contact Compass at:
Monday - Friday, 9 a.m. - 7 p.m. ET
Your CF social worker may refer you to a specialist such as a psychologist. A CF psychologist has expertise in identifying and treating problems with behavior, emotional challenges such as
depression or anxiety, learning disabilities and social interactions with family, friends, peers or co-workers.
The CF psychologist on your team may also help you overcome problems with balancing treatments and other aspects of your life by teaching you coping strategies. The sessions you have with a psychologist may be brief consultations during regular CF care center visits or during CF hospitalizations. You may also be referred to other therapists or mental health specialists for ongoing support.
If you decide to see a therapist or mental health specialist, it is important to talk with your health insurance plan. Mental health treatment therapies or seeing a psychiatrist is often covered under a special mental health
"carve-out." This means that your claim for mental health services are processed and paid for by a different company than the company that pays for your medical services.
At a glance, your CF psychologist:
During your care center visits, the CF respiratory therapist performs pulmonary function tests (PFTs) to measure the air flow and volume in your lungs. This team member also helps you with your pulmonary therapies, which are designed to clear mucus (sputum) out of your lungs, control bacteria and reduce the inflammation of your airways. These therapies involve airway clearance techniques (ACTs) and inhaled or nebulized medications.
Your CF respiratory therapist can teach you and your family how to properly take your inhaled medications. They can also show you how to use and care for the medical equipment used to deliver these medications into your lungs. This equipment may include nebulizers, air compressors and oxygen systems. With their help, you will learn how to clean and maintain this equipment while at home or even when you're travelling.
At a glance, your CF respiratory therapist:
Not all CF care teams include a physical therapist. If yours does, then he or she is trained to design an
exercise or physical activity program to fit into your daily routine. Regular exercise helps your overall health because it promotes heart and muscle function, which builds strength and gives you energy to live an active life. It is also important for your health with CF because it can help improve your ability to cough mucus out of your airways, which is critical for better lung function.
Your physical therapist will work with you to design an exercise or fitness program that is based on your age, health status and include sports or other physical activities that you enjoy doing in order to maintain lung function and a generally good physical fitness level.
You can also work with your CF physical therapist on ways to maintain a good posture, build or regain muscle strength, and endurance through various techniques to improve your mobility and lung function. They can also help you address embarrassing issues such as
urinary incontinence. In some CF care centers, the physical therapist will also help you learn ACTs, which should be done in addition to your fitness program.
At a glance, your CF physical therapist:
Watch the webcast below to learn more about your respiratory therapist and physical therapist, including:
If your care team includes a CF pharmacist, he or she will help you learn about the benefits and potential side effects of your CF medications, including how to take your medication both at home and while you're in the hospital. They work with you to make sure the medications that you've been prescribed do not react with each other in a way that can harm you. CF pharmacists also check dosages so you get the right amount of medication at the right time in order to be the most effective.
Your team may also have a CF research coordinator, who can answer questions about a clinical trial and help determine if you are eligible to enroll or participate in a specific trial.
Clinical trials usually take place at a care center that is also a research site.
Learn more about what clinical trials are, how to find clinical trials and how to participate in one.
Additional members of your CF care team may include physician specialists. These health care professionals are also referred to as subspecialists and have extensive training and practice in a particular field of medicine or surgery.
Physician specialists who may be involved with CF care include:
An otolaryngologist (or "ENT" for ear, nose and throat doctor) is a doctor who has special training in the diagnosis and treatment of disorders that affect the nose and sinuses. The same basic defect that affects the lining of the lungs can also affect the lining of the nose and sinuses in people with CF.
A gastroenterologist is a doctor who has special training in the diagnosis and treatment of diseases of
the digestive system. This includes problems with the esophagus, stomach, intestines and liver.
An endocrinologist is a doctor with special training in the diagnosis and treatment of
CFRD and other hormonal diseases, including problems with thyroid hormone and growth hormone.
If you are receiving care at a CF Foundation-accredited care center, your care team may include other doctors, medical students and health care professionals who are learning about CF and the best ways to treat people with CF.
Health care professionals who are being trained in CF care include:
A fellow is a doctor who has finished medical school and residency and is getting specialty training. The primary or attending CF doctor supervises fellows. At CF care centers, fellows are often pediatricians or internal medicine doctors training to become pulmonologists. After years of special training, the fellow often goes to another CF care center to be a CF doctor.
A resident is a doctor who, after finishing medical school and receiving a medical degree, is getting advanced training, often in pediatrics or internal medicine.
A medical student is working to become a doctor. Medical students are learning about diagnosing illnesses, caring for people and evaluating and reporting a person's condition and progress to the attending physician.
A genetic counselor is a health care professional trained in genetics. A discussion with a genetic counselor can help you understand inherited conditions and how an inherited disease is passed on from parent(s) to children. For example, families with a history of CF may learn their
risk of having a child with CF through a genetic counselor.
Watch the webcast below featuring two CF genetic counselors to learn more about:
Child life specialists are trained to help children and their families cope with medical conditions and the tests and treatments required in the care center and hospital and at home. A child life specialist helps children understand what is happening in a simple way according to their age and abilities. This helps children deal with their fears about illness and medical tests and treatments.
At a glance, child life specialists:
Many CF care centers have chaplains on the CF care team. They can help you and your family with spiritual issues.
Toward the later part of adolescence, most people living with cystic fibrosis transfer from a CF care center that specializes in treating children to one that specializes in treating adults with CF. Most people with CF transition from pediatric to adult care between the ages of 17 and 21.
This transition shouldn't happen abruptly, but instead should be a planned process over time. It may be a little sad and scary to leave the care center and the people you know so well, but as you become an adult with CF, you will require different specialized care. If you have any concerns about transitioning, talk them over with your care center team.
Your new team will still include a doctor, nurse, dietitian, social worker, respiratory therapist and program or care center coordinator, along with other specialists you may need, but they're all experts in providing for the special health care needs of adults living with CF. They can also help with adult issues such as marriage, parenthood, careers and health insurance so that managing your CF doesn't take over your life.
Adult care teams work directly with you, the person living with CF. Parents and other family members remain an essential part of your support team, but your adult CF care team will ask for your permission first before talking with them about your care. You may want members of your family to join you when transition first happens -- but you will soon be able to take on the responsibility of your own health and CF care.
As you become an adult and gain more freedom, you will be take on more responsibility in managing your CF. By the time you move to the adult care center, you'll be performing many of the CF-related tasks that your parents once did for you. For instance, most adults with CF live on their own and do their own CF care. Since most airway clearance techniques (ACTs) offer more independence with treatments, the CF respiratory therapist on the adult team can help you find the technique that's best for you.
Watch the webcast below to hear Michael Boyle, M.D., FCCP, discuss:
The Cystic Fibrosis Foundation provides funding for and accredits more than 130 CF care centers and 55 affiliate programs nationwide, including 96 programs for treating adults with CF. Located at teaching and community hospitals across the country, these care centers offer the best care, treatments, and support for those with CF.
Find a care center near you.
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