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.
People with chronic diseases, such as cystic fibrosis, are at greater risk for developing clinical depression. When left untreated, depression can interfere with your ability to manage your CF effectively and experience a better quality of life.
Many aspects of living with cystic fibrosis and the effects it has on your life can make you sad. These feelings may come and go as you manage the disease or experience events or changes in your or your child's health.
Depression is different. Unlike ordinary sadness, clinical depression can last for a long time -- weeks, months, or years -- if not treated. People who have depression can have extended periods where they feel hopeless and lose interest in things they normally would enjoy.
Researchers found that people with CF and parents who take care of children with CF are more likely to experience depression than people in the general population.1
Untreated depression can affect both your physical and emotional health, and interfere with your ability to take care of yourself or your child.
People with untreated depression:
Knowing if you or your child is clinically depressed can be hard. Some symptoms of depression, such as fatigue or weight loss, also can be symptoms of CF.
“It's hard to know if you're depressed because with CF, you can feel tired and crappy anyway. You just think [what you're feeling] is part of it.” -- Rich DeNagel, adult with CF
You or your child may be suffering from depression if five or more of the following symptoms are experienced for two weeks or more:
If you are considering suicide, immediately call:
If you believe someone you know is thinking about harming himself or herself, call 911.
Dr. Anna Georgiopoulos talks about symptoms of depression and what changes you should look for to know when you should seek help for it.
Trying to feel better on your own or delaying professional help can make things harder for you and your loved ones.
There are effective treatments for depression that can help you get back to living the life you want to live, so don't wait to ask for help.
If you think you or your child might be depressed, talk to a member of your CF care team about it. Depression is a medical illness that can seriously affect your emotional wellbeing -- and your overall health -- if the depression is not treated.
You may be able to help prevent depression by talking to your care team about how you're feeling before those feelings get in the way of your daily routine. Let them know if you're having trouble coping with a new treatment regimen or dealing with a change in your or your child's health.
Many CF care teams offer preventative support and screenings to help determine if you or your child is depressed and help you get treatment. Treatment will depend on how mild or severe the depression is, and may include getting help from a mental health professional with experience helping people with depression through counseling, medication, or a combination of the two.
Andy Lipman, adult with CF, discusses how important getting help for his depression was not only for him, but also his wife and children.
Depression is a complex disease and the exact cause is unknown. Having CF, or caring for a child with CF, increases your risk for depression. In addition, certain other factors also can increase your risk for depression, including:
If you are a parent of an adolescent with CF and you are depressed, your child is almost 2.5 times more likely to experience depression. Teenagers and young adults are more likely to experience depression than children younger than 12 and adults older than 30. Women are more likely to have depression than men.2
We don't always know what causes depression, but we can treat it effectively if symptoms of depression are identified. After successful treatment, there are other skills and habits that you or your child can learn that may help prevent the symptoms from reoccurring.
Your care team may offer to screen you or your child annually during one of your CF care center visits. You and your child may be asked to complete a short survey that should take a few minutes to finish. The survey may ask whether you're experiencing feelings of sadness or hopelessness, how often you have felt them in the past two weeks, and how difficult these feelings have made it for you to perform your usual activities, such as going to work or taking care of things at home.
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're letting their families or loved ones down. On the contrary, asking for help is a positive step toward getting better. Depression can be treated successfully, but only if the symptoms are properly identified.
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.
If the survey results suggest that you or your child may be depressed, your CF care team may recommend further evaluation to determine if treatment is necessary. If your care team does not include a mental health specialist, you or your child may be referred to a mental health specialist who works outside of your care center and can evaluate your child before offering the appropriate treatment. For parents who may be experiencing depression, the CF care team may refer you to your primary care physician who can coordinate your care.
Treatment for depression is highly effective, and 80 to 90 percent of people with depression respond well to treatment.3 Treatment depends on how mild or severe the depression is and can include counseling such as talk therapy, medication, or both.
Talk therapy involves meeting with a health care professional who specializes in treating depression, discusses your issues, and works with you to develop solutions. Common types of talk therapy for treating depression include cognitive behavioral therapy (CBT) and interpersonal therapy (IPT).
CBT can help you 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. IPT can help you identify issues that may be causing problems for you, such as conflicts in your relationships or unresolved grief.
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.
Medication is typically prescribed by a psychiatrist who is a medical doctor with special training in identifying and treating mental health conditions. Medication can help to restore the balance of brain chemicals, which are called neurotransmitters. Neurotransmitters, such as dopamine and serotonin, are chemicals that relay signals between nerve cells. When they are out of balance, they can negatively affect your mood.
A common class of antidepressant medication is serotonin reuptake inhibitors (SSRIs). SSRIs work by preventing the reabsorption of serotonin, which can relieve depression.
Antidepressant medications begin working within one to two weeks, but you might not experience their full effects for two to three months. If you have not started to feel better after several weeks, tell your doctor. He or she can adjust your medication dosage or prescribe different medications to provide the best effect.
For people with more severe depression or depression 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 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 professional about how to put them in contact with each other to ensure that you get the right care.
The Affordable Care Act expanded coverage for conditions, such as depression, and most insurance providers cover preventive services, such as depression screening. Most large insurance plans cover depression screenings for adults and children older than 12 years.
Insurance providers often have different policies regarding coverage for treatment of emotional issues. Some cover a limited number of talk therapy visits. Some cover only medication. Call your insurance provider for information about treatment for your or your child's depression.
You also can contact Cystic Fibrosis Foundation Compass at:844-COMPASS (844-266-7277)
Monday - Friday, 9 a.m. - 7 p.m. ETcompass@cff.orgCompass 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.
In addition to care provided by a mental health specialist, you can do the following things to help yourself recover from depression and prevent it from coming back:
Although these activities are not a substitute for professional care, they can make a real difference in your mood.
1., 2. Quittner AL, Goldbeck L, Abbott
J, Duff A, Lambrecht P, Solé A, Tiboshc MM, Brucefors AB, Yüksel 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.
3. American Psychiatric Association
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