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.
Anxiety is a normal emotion that comes and goes in response to fears or worries about changes in health, work, relationships, or money. A person is said to have an anxiety disorder if the anxiety does not go away, gets worse over time, and prevents a person from participating in daily activities.
Many aspects of cystic fibrosis can cause anxiety. These feelings can come and go as you manage the disease and with events or changes in your or your child's health. An anxiety disorder differs from normal anxiety because it can occur for an extended period of time and interfere with your ability to manage your CF effectively and experience a better quality of life.
Anxiety is one of the most common emotional issues that people face. People living with CF -- or who have a child with CF -- experience a great deal of stress. Making time for daily treatments, remembering to take medications, missing out on things you want to do, and being hospitalized for an infection all cause stress and anxiety, which affect emotional wellness.
Studies have shown that people with CF, as well as parents who take care of children with CF, are more likely to experience anxiety than people in the general population. People with CF and their caregivers who have anxiety are also more likely to experience depression as well.1
An untreated anxiety disorder affects both your physical and emotional health and how you care for yourself. For example, people with untreated anxiety:
Some of the symptoms of anxiety can be symptoms of other illnesses. Also, you may not experience all of these symptoms. Anxiety affects how you think and how much you think about certain things, but it also can have physical effects.
If you experience symptoms for at least six months, you may be suffering from an anxiety disorder.
Symptoms of anxiety include:
Children and teenagers may have additional symptoms, including worries about:
Dr. Anna Georgiopoulos talks about symptoms of anxiety, what's normal, and when you should seek help for it.
If you think you or your child might have an anxiety disorder, talk to your care team members. They can help you determine if you or your child has anxiety and help you get treatment. Most people who have anxiety can be treated successfully and overcome it. Treatment depends on how mild or severe the anxiety is, but typically includes counseling, medication, or a combination of the two. Most people with anxiety are treated successfully.2
Many people do not want to seek help for anxiety because they feel it is a sign of weakness or that it means they are "crazy." Many people also believe that they will be judged if other people find out. Anxiety is a medical illness that has nothing to do with how strong a person is and does not mean that a person is crazy. Seeking help for anxiety and doing something to treat it is a sign of strength and self-care.
The exact cause of anxiety is unknown. Having CF, or caring for a child with CF, increases your risk for anxiety. In addition, certain other factors also can increase your risk for anxiety, including:
If you are a parent of an adolescent with CF and you have an anxiety disorder, your child is 2.2 times more likely to experience anxiety.3
In addition to the generalized anxiety disorder many people with CF or their parents may experience, some people experience a very specific form of anxiety centered on a fear of medical procedures. Many people with CF need to have medical procedures, such as placement of feeding tubes or peripherally inserted central catheter, or PICC lines, so this type of anxiety is common in the CF community.
Feeling nervous about medical procedures is natural, but the exaggerated fear, or phobia, that some people with CF experience before medical procedures is not normal when it interferes with their ability to manage their CF effectively.
We don't always know what causes anxiety, but we can treat it effectively if the symptoms of an anxiety disorder are identified. After successful treatment, there are other skills and habits that you can learn that may help prevent the symptoms from reoccurring. Your care team may offer a screening to you or your child annually during one of your CF care center visits.
Your care center team may ask you or your child to complete a short survey that should take only a few minutes to finish. The survey may ask if you're experiencing feelings of anxiety, such as nervousness, uncontrollable worry, or difficulty performing your usual activities, such as going to work or taking care of things at home.
If the survey results suggest that you or your child may have an anxiety disorder, your CF care team may recommend further evaluation and treatment if necessary. If your care team does not include a mental health specialist, you may be referred to one who does not work at your care center and can evaluate your child to determine if treatment is necessary. For parents who may be experiencing anxiety, the CF care team may refer you to your primary care physician to coordinate your care.
It is important to be honest when completing the survey. Some people find it difficult to admit that they are struggling because it makes them feel like they are letting their families or loved ones down. On the contrary, asking for help is a positive step toward getting better. Anxiety can be treated successfully, but only if the symptoms are properly identified.
"My mom was sitting beside me when I was doing a screening. Even though I should have answered 'yes' to many of the screening questions, I answered 'no' because I didn't want my mom to feel bad." -- Hannah Buck, adult with CF
Read more about Hannah's experience.
Matt James and Dr. Anna Georgiopoulos talk about the benefits of discussing your emotional health regardless of your screening results to help you maintain your quality of life.
Treatment for an anxiety disorder is highly effective and depends on how mild or severe the anxiety is. Treatment typically includes cognitive behavioral therapy, medication, or both.
Cognitive behavioral therapy can help you or your child identify and change unrealistic or unhealthy thoughts, emotions, and behaviors. After identifying unhealthy thoughts, emotions, and behaviors, you challenge and replace them with more effective thoughts and behaviors. Your mental health professional also may teach you relaxation techniques and deep breathing as part of your treatment.
Medication can help restore the balance of brain chemicals and is typically prescribed by a psychiatrist, who is a medical doctor with special training in identifying and treating anxiety. Although these medications are commonly known as antidepressants, they also are very effective at helping people with anxiety. One class of antidepressant medication commonly prescribed to treat anxiety is serotonin reuptake inhibitors (SSRIs). SSRIs work by preventing the reabsorption of the chemical serotonin, which can relieve anxiety. These medications can begin working within one to two weeks, but you might not experience their full effects for two to three months. If you have not begun to feel better after several weeks, tell your doctor or care team.
For people with more severe anxiety or anxiety that does not improve with either talk therapy or medication, treatment may be a combination of the two.
Because the treatment of CF is complex and involves many medications and different therapies, coordination between your CF care team and your mental health specialist is important to avoid any side effects or unintended drug interactions. Coordination is also important for monitoring your symptoms, adjusting your treatment plan, and providing follow-up screenings.
Talk to your care team and your mental health specialist about how to put them in contact with each other to ensure that you get the right care.
Treatment of anxiety, such as a phobia related to medical procedures, begins with cognitive behavioral therapy. If anxiety levels before procedures do not improve, medications called benzodiazepines may be prescribed beforehand. Benzodiazepines are sedatives that help a person relax. They are for short-term use only, because they can be habit-forming.
Although treatment for anxiety and depression is largely the same for people with CF as it is for other people, CF has its own unique challenges. Dr. Anna Georgiopoulos talks about how you can make talking about those unique challenges part of your treatment.
Insurance providers often have different policies regarding coverage for the treatment of emotional issues, such as anxiety. Some cover a limited number of talk therapy visits. Some cover only medication. Check your insurance enrollment materials, or call your insurance provider for information about treatment for your anxiety.
You also can contact Cystic Fibrosis Foundation Compass at:844-COMPASS (844-266-7277)
Monday - Friday, 9 a.m. - 7 p.m. ETcompass@cff.org
Compass is a personalized service that can help you with insurance, financial, legal, and other issues. Experienced and dedicated Compass case managers help people with CF and their families understand their coverage options and connect them to community resources for affording care.
In addition to care provided by a mental health specialist, you can do the following things to help yourself recover from an anxiety disorder and to help prevent the symptoms from coming back:
Although these activities are not a substitute for professional care, they can make a real difference in your anxiety levels.
1., 3. Quittner AL, Goldbeck L, Abbott J, Duff A, Lambrecht P, Sol A, Tiboshc MM, Brucefors AB, YAB, Y H, Catastini P, Blackwell L, Barker D. Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax. 2014;69:1090-1097. doi:10.1136/thoraxjnl-2014-205983
2. American Psychiatric Association: What Are Anxiety Disorders?
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