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.
Procedural anxiety is the fear or worry related to any medical procedure that can interfere with your ability to receive appropriate medical care. You can partner with your cystic fibrosis care team to find ways to manage this common anxiety.
Worrying about medical appointments, tests, having your blood drawn, or being admitted to the hospital is common. People with cystic fibrosis often experience anxiety related to the frequent medical procedures that are part of their CF care.
Unlike general anxiety, which affects how you function in daily life, procedural anxiety is associated with medical procedures or hospital admissions. When anxiety builds to where it causes distress or interferes with a procedure, you may be experiencing an anxiety disorder that should be treated.
Procedural anxiety can start to build before the procedure and can even last after the procedure is finished. This anxiety can get worse over time if left untreated. Fortunately, you can partner with your CF care team to find ways to manage this common anxiety as part of your CF care.
“Our bodies are biologically designed to have reactions to things that are new, unexpected, potentially harmful, or uncomfortable, and so most people will have these sorts of reactions. They are normal and can be treated …” -- Stephanie Filigno, PhD, clinical psychologist at Cincinnati Children's Hospital Medical Center
People with cystic fibrosis experience many medical appointments and procedures -- that can begin as early as infancy. Given the frequency of procedures that occur over the lifetime of a person with CF, having a negative experience that leads to future anxiety is more likely than it is for people without CF.
Monique Wiegand, an adult with CF, pulmonologist Isabel Neuringer, MD, and psychologist Stephanie Filigno, PhD, discuss how procedural anxiety is a common reaction to the stresses of a clinic visit or procedure.
Procedural anxiety can be triggered by:
“A doctor may not diagnose you with it, but -- like other kinds of anxiety -- I really believe it is a real thing, and I have had this anxiety for as long as I can remember. 'What did you blow?' 'What were your numbers?' 'What are you breathing at?' So much pressure ...” -- Somer Love, an adult with CF, from the CF Community Blog
Parents can increase anxiety in their children, especially young children, without intending to when they, themselves, appear highly nervous or try to minimize their children's fear. Children can pick up on these emotions from body language and tone of voice. When children are made to feel ashamed or punished for having these feelings, it often makes these feelings harder for them to manage.
“Hearing someone say 'it's not that bad' or 'you need to sit still,' … those interactions can make people feel alone or that they've done something wrong.” -- Stephanie Filigno, PhD, clinical psychologist at Cincinnati Children's Hospital Medical Center
Adults and children can experience procedural anxiety differently. Adolescents and adults may have developed the ability to use logic and can reassure themselves from positive past experiences to cope (“I have done this before, and it went fine.”) For younger children, talking about a procedure may bring more attention to their fears, making it worse. Children rely on their parents or caregivers to show them how to manage their anxiety.
Noticing when your procedural anxiety -- or your child's -- is happening, or what is triggering it, can help you or your child better manage the feelings.
“No matter what we do to help prepare Dean, we know he still has emotions to deal with and there still may be a meltdown. We are not always able to comfort and prepare him. We take lots of deep breaths, give lots of hugs, and stay as positive as possible.” -- Rachael Havey, mother of a child with CF, from the CF Community Blog
Although triggers for procedural anxiety are associated with medical procedures or hospital admissions, many of the symptoms are the same for general anxiety. Symptoms of procedural anxiety include:
These symptoms can be so overwhelming that it disrupts a person's ability to function before, during, or even after the medical procedure has ended.
Procedural anxiety becomes a problem when the symptoms:
There is a lot you can do to prevent or manage procedural anxiety as part of your CF care. And, the good news is, you don't have to do it alone. You can start by:
Monique Wiegand, an adult with CF, pulmonologist Isabel Neuringer, MD, and Rachael Havey, mother of a child with CF, discuss how people with CF and their care teams can work together to manage procedural anxiety effectively.
If you think your anxiety is keeping you from getting the medical care you need, share your concerns with your care team. They have seen a lot of people with CF struggle with this and are there to help you. Be as specific as possible when describing your feelings.
“It's important for people to share what is happening on the inside so that we can help address that. That may be feeling comfortable saying 'I'm so anxious I can barely breathe' ... I might not be able to see that, and I want to know that. I won't know if your child didn't sleep very well last night because they were so worried about coming to clinic.” -- Stephanie Filigno, PhD, clinical psychologist at Cincinnati Children's Hospital Medical Center
Write your feelings down before or during a clinic visit or procedure to help you track and describe what you're experiencing to your care team. It may be difficult to pinpoint why you're experiencing anxiety and you may not experience it until after the procedure, when the emotions can seem unrelated. Logging your feelings over several visits may help you identify patterns that point to procedural anxiety and what is triggering it.
Knowing what to expect about an upcoming visit or medical procedure can provide a sense of control by increasing your familiarity with what is going to happen during the procedure, who is performing it, or where it will take place.
When you know more about what is involved, you can discuss ways to make the procedure feel less stressful with your care team or the clinician performing the procedure. People of all ages can feel more relaxed when they can control some parts of the procedure, including watching or not watching the procedure, picking where to get a shot, or if the procedure is done at the beginning or the end of a clinic visit.
Communicating with others with CF who have had the same procedures you have can also help. They can tell you what the procedure was like for them, what emotions they experienced, and what they did to cope with the procedure.
“I was at a point where I didn't just need the knowledge of experts, I needed the experience of peers … Sometimes you just need to talk about things that have to do with your shared experiences ... It makes you feel less alone.” -- Nathan, CF Peer Connect participant
For children, there are ways to explain procedures that may include play. Many hospitals offer child life specialists whose job it is to help children prepare for procedures and develop coping skills. Ask your care team if this is a service your child can benefit from.
Things your care team may want to know:
Questions you may have for your care team:
Questions to ask your or your child's care team are:
The following can be done to reduce the pain experienced with procedures:
For infants, the following is recommended:
“We asked our care team for a prescription for lidocaine cream. We now carry it with us as part of our preparation for upcoming procedures. It's one of those things we can control, making the experience less stressful.” -- Mom of a young adult with CF
Both adults and children can distract themselves from a medical procedure that causes anxiety by:
“One of the biggest things I do to help myself in terms of anxiety is distract myself. Distraction is a huge help.” -- Monique Wiegand, adult with CF
For children, choose distractions that are age appropriate. Examples include:
Comfort positions are an alternative to holding a child down, which can be stressful and traumatic for the parent, child, and care team. There are several ways you can position your child so they feel secure while the medical professional performs the procedure, such as:
Kahli Blickenstaff, CCLS, discusses techniques to help children with CF and their parents cope with procedural anxiety.
Procedural anxiety can affect a child's behavior in several ways, including:
Many people judge themselves or their child when procedural anxiety leads them to behave negatively. Procedural anxiety can cause an exaggerated “fight or flight” response when we sense danger. At a certain point, the person becomes so overwhelmed that it may be difficult to reason with them. Instead of trying to discipline a child, it's better to work through it by comforting them, and helping them develop coping skills to better manage it in the future. Your care team can help you find ways to comfort your child and build these coping skills.
Get 5 tips one mom uses to prepare her child for upcoming medical procedures.
Your care team can help coordinate your care with other health professionals, including mental health experts and child life specialists. These specialists may be part of your multidisciplinary CF care team or someone whom your care team refers you to.
A mental health professional can help you or your child learn and practice techniques to manage difficult thoughts, feelings, and behaviors that interfere with your ability to participate in your CF care.
These techniques may include:
“We can help you calm the body's reaction down and put some skills in place to think about these things in a more helpful way.” -- Stephanie Filigno, PhD, clinical psychologist at Cincinnati Children's Hospital Medical Center
Health care professionals who can help you cope with procedural anxiety include:
“… it is the entire team's responsibility to coordinate and build trust between the team and the patients ... I think it is extremely helpful for us clinicians and members of our care team to express empathy toward a patient who is experiencing procedural anxiety, to hear how we can best help them with this anxiety.” -- Isabel Neuringer, MD, pulmonologist and co-director at Massachusetts General Hospital Adult CF Center
Monique Wiegand, an adult with CF, and psychologist Stephanie Filigno, PhD, discuss the importance of validating the anxiety a person is experiencing to help them move forward.
If anxiety levels before procedures do not improve, oral or injected medications may be recommended to promote relaxation and include:
Most health insurance policies cover treatment related to mental health. Specific coverage depends on the type of insurance you have (i.e., private, public, or if you have no insurance).
You can ask a Cystic Fibrosis Foundation Compass case manager to help you determine if you have coverage to treat procedural anxiety with a mental health professional. Your coverage may also include general wellness options, such as meditation or yoga.
Questions a Compass case manager can help answer include:
Even if you don't have insurance, CF Foundation Compass case managers can help you explore coverage options, as well as help identify available local resources based on your situation. The CF Foundation offers this free and personalized service to help people with CF and their families with insurance, financial, legal, and other issues.
Contact CF Foundation Compass at:844-COMPASS (844-266-7277)
Monday through Friday, 9 a.m. until 7 p.m. ET email@example.com
Much of the research to date regarding procedural anxiety has been published on pain management in children. One study found that using a program throughout a hospital, known as the Children's Comfort Promise™, was associated with a significant decrease in overall pain and improved the use of evidence-based practices for managing pain from needles.1 Several studies have found that distraction, cognitive behavioral therapy, hypnosis, and breathing strategies helped children decrease their pain, distress, and fear of needles.2, 3
One small CF-specific project found that people with CF who tried tools to manage stress during lung function testing said that they would be willing to use them in future tests. In addition, PFTs didn't take more time when people used the tools than when people didn't.4
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 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.
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