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.
This piece describes traumatic experiences and iatrogenic violence, and some people might find it triggering.
Understanding that I suffered trauma from medical encounters during my childhood helped make me a more effective self-advocate as an adult.
July 12, 2021
A Chance Meeting Led to My Involvement in the CF Community
My Journey as an Athlete With CF
When I was 12 years old, I had to be admitted to the hospital, via the ER, with what turned out to be DIOS -- a bowel blockage. Since I had been born with meconium-ileus, I had a vague understanding of what a bowel blockage meant and was terrified out
of my mind that I would need surgery. Fortunately, the DIOS could be resolved without surgery. However, what has stayed with me to this day is the trauma that I suffered during the 48 hours in the hospital. Therapy has helped me understand how this
and similar past experiences have affected how I advocate for myself effectively in the present.
Even before that episode with DIOS, I had struggled with medical visits. As a child, I felt scared and helpless at the cystic fibrosis center, and during exams
and procedures I often didn't receive age-appropriate explanations of what was going to happen to me. I learned early that CF and its treatments were scary and unpredictable. I wasn't in control of my body -- CF and the doctors were. I reacted to
this loss of bodily autonomy with aggressive behavior -- I often refused to cooperate and lashed out verbally at the medical staff.
To the staff at my pediatric CF center, I was “difficult,” “annoying,” and, overall, a bother. Apparently, in Germany during the 1990s, psychological training was not part of pediatrics care. Neither was empathy.
The day I was admitted for DIOS confirmed this lack of understanding from my medical team among many who treated me. I don't fully remember all the details of the exam from the on-call doctor that evening, except that while I was lying on the scratchy
paper covering the exam table, he told me to turn to the side and pull my knees up to my chest. I asked him why, but instead of explaining that he wanted to give me a rectal exam to check for bleeding, he turned me forcibly and performed the exam
without warning or consent.
Dorothee finding time to relax with yoga outside.
During an ultrasound exam a little later, which was performed by a different doctor, I kept asking whether he could “see” anything, since I was still terrified of needing surgery. Apparently, this was so annoying to him that he finally asked angrily,
“Do you want me to find something?” which shut me up. This doctor did confirm the DIOS, so I was admitted for 48 hours of humiliating procedures of enemas and laxatives. Although after treatment the DIOS was gone, the trauma stayed with me.
In the following years, I continued to experience situations in which I did not receive age-appropriate explanations and often was examined in front of several doctors without proper consent or concern for me -- a shy teenage girl. So I continued to behave
aggressively during those encounters.
Things improved slightly when I switched to adult care, and later when I moved to a new city and a new CF center where I found a doctor who took my mental health into account. Around this time, I also started seeing a therapist.
But even as an adult, I continued to exhibit the “bad behavior” of my childhood days in medical settings. If I felt that I wasn't listened to, if I was left waiting for hours without updates, if I had to undergo exams or procedures and felt I wasn't in
control, I lost my carefully maintained composure. Again, I was difficult and non-compliant. I was afraid to seek medical help even if I needed it. And I was deeply ashamed
of my apparent lack of good upbringing and manners and my childish transgressions. I kept wondering: Why was I such a bad CF patient?
I had years of therapy for depression and anxiety (about which I have written in another blog post).
But, I was unable to make a connection between my anxiety disorder which manifested itself as a fear of loss of control of my body (I was afraid to get sick) and the years of traumatic hospital experiences during my childhood (of which the DIOS experience
is only one particularly harrowing example).
Only during the past year, with a therapist (who listened to my initial suggestion that maybe some childhood experiences were to blame for my difficulty handling hospitals), have I been able to start dealing with my trauma.
My therapist uses both cognitive behavioral therapy and Eye Movement Desensitization and Reprocessing. EMDR is a therapy used to treat Post-Traumatic Stress Disorder. During sessions, I relive parts of a traumatic event by recalling it in as much detail
as possible, while my therapist moves her hand side-to-side in front of my eyes to direct my eye movement.
This treatment, together with speaking about what happened to me, recognizing that my experiences were indeed traumatic, and acknowledging that my emotions are valid, has helped me to better manage my fears and aggressions when I visit my CF center or
have to be admitted. I now know that my “bad behavior” was influenced by untreated trauma and that it was an attempt to fend for myself and to preserve control.
Therapy has enabled me to speak up calmly if I feel that I am not in control and to advocate for my emotional wellbeing by asking for explanations before and during procedures. Sometimes I still get angry, but now I usually calm down faster.
When I had to be admitted for a possible DIOS a few weeks ago, I was able to navigate the diagnostic process completely differently, calmly advocating for myself, which showed me what a difference therapy and community support has made for me.
I only wish I had understood sooner that trauma does not necessarily have to be caused by one threatening event like experiencing a battle, a terrorist attack, or a terrible accident, but that experiencing numerous difficult situations that threaten your
feeling of control and bodily autonomy over time can be equally traumatizing.
CF is not traumatizing for everyone, and CF centers and pediatric practices now pay much more attention to CF's psychological toll. But, as I have learned through many wonderful CF community members, some of us have indeed had traumatic experiences which
cause us difficulty in the present. We're not “bad” patients -- some of us just struggle with trauma. If you're reading this: it's okay to voice your experiences -- even if they feel “small” or “unimportant” -- and to get help. You're not alone. Facing
those experiences can help you become a better advocate for your emotional well-being.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Born in Germany, Dorothee was diagnosed with cystic fibrosis at birth. She has always tried not to let her CF stop her from enjoying life. She loves traveling and learning new languages. After graduating high school, she completed a volunteer service
in a parish in Stockholm. She lives near the Baltic Sea with her husband and works as a junior lecturer in American literature at Kiel University. She is pursuing her PhD with a dissertation on representations of time and disability in contemporary
American literature. She tweets about life with CF on Twitter.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the 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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