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.
The impact of cystic fibrosis on a parent and child relationship is both unique and everchanging. As I've grown into adulthood, my mother and I have learned new ways of talking about this illness and have seen more clearly how it affected us in the past. Now, more than ever, I'm learning a large part of being cared for is caring for those who have cared for me.
March 10, 2020
Adapting to an Online Volunteer Leadership Conference
What I Learned About My Trikafta Weight Gain
My mother's 28-year-long career as a nurse equipped her to be an exceptionally skilled and knowledgeable caregiver for me -- a person with cystic fibrosis. But, being such a skilled caregiver meant my mother had to learn how to balance mom mode and nurse mode. When I was a child, this was a hard balancing act for her, particularly with my rebellious streak of lying about taking medications and skipping treatments. Now that I am an adult, we've reached a symbiotic point encouraging openness, honesty, and empathy that I often forget how hard it was.
“Dear mommy, I'm sorry … I want to do my best in everything to satisfy you and live up to your standards. But, I can't always do everything you expect me to do. I have been asked for so much, so fast. Only two years ago, I didn't have to worry about so much ...”
This paragraph begins an apology letter I wrote to my mother in elementary or middle school. Neither of us can remember the cause for such a letter, nor the possible stressors, worries, and new responsibilities informing the letter. The pleading voice of forgiveness feels foreign and trite. I roll my eyes at it.
I also deeply understand the agony my child-self attempts to convey, albeit in simple terms. As a kid, the agony felt like it would never end; as an adult, I know there's always room to grow.
When I try to remember how we got out of that stage in our relationship it feels very muddy. There's no step-by-step guide. No playbook. We just took the time, at our own paces, to start listening to each other more.
The biggest shift in my relationship with my mom happened when I began therapy. Although therapy came out of necessity and personal hardship, therapy has always made me excited. When I first started, it was like I could feel myself growing into the person I wanted to be, rather than wallowing in the person I hated being. Now, after each session I still leave my therapist's office lighter, more confident, and more at peace with myself and the world.
I loved sharing my therapy insights with my mom. I'd talk to her about problems she was going through and circle back to a concept or tool I learned in a recent session. Sometimes it would make my mom feel bad -- she'd say I was “therapy-talking” her. But, after a time, and after some of her own personal hardships, she joined me in the therapy boat.
Recently, my mom and I were sitting on the couch talking while drinking tea. I think I was feeling sad because I remember my head on her shoulder or chest, and she was sort of holding me. I had an emotional therapy session that day in which I had told my therapist that as a kid I felt responsible for my mother's emotions. That every time she was sad, I was sad because I felt like I was the one who was supposed to make her happy. We were silent and then my mother said, “Sometimes I'm so scared … that you're just going to get really, really sick.”
I told her that I was fine with dying if that would happen soon. Well, I said it in a much more eloquent way, of course, slower and with more words -- but that was the gist.
She began telling me of the other CF patients she had taken care of over the years. On the same week of my diagnosis in 1997, she had gone into the hospital to visit one of her favorite CF patients who was taking a turn for the worse. My mom told me about how the patient was afraid to see her.
“She said, 'I heard about your daughter, and I was so scared to see you knowing that she was diagnosed and I'm here not doing well,'” my mother said.
And that was when it clicked for me. Even though I could never meet this girl, we had this thing in common, this feeling of being responsible for other people's pain. Despite having absolutely no culpability in my diagnosis nor her decline in health, it weighed on her.
I have this theory that children who grow up sick often learn how to deal with other people's emotions by taking responsibility for them.
I think it comes from worrying so much that you are, or will, become a burden. This was one of the first things I realized in therapy that I needed to let go of. Taking responsibility for my mother's emotions was exhausting me. It was also holding me back from seeing where my mom's feelings came from. Letting go of this responsibility helped me see my mom as another person with complex thoughts, feelings, and experiences that I would only ever get a glimpse of.
Sometimes parents want to fix everything. Sometimes they will try their hardest to provide everything you need even when it's beyond their means. Sometimes you need to remind them to take care of themselves. Over time, you might do more on your own. But, they will always be there.
Reshaping my relationship with my mom was a process of learning how to rely on each other more intentionally. Going to therapy separately and working through our issues on our own makes it easier to be there more fully for one another now.
Caregiving should be a two-way street. But, caregiving also looks different for each giver and each receiver. Honoring what we can do and accepting that we can't do everything is so important.
Asking for help is hard. Learning how to tell when someone might need help takes time and effort. My mom and I are still working on that. We always will be. Our relationship will continue to change, like all parent-child relationships. I'm happy to say that -- for now -- we've found a way to change together.
Adult with CF
Tannaz Motevalli is an Iranian-American artist, writer, and researcher living in Baltimore, MD. She works full-time as one of the exhibition coordinators for the History of Medicine Division's Exhibition Program at the National Library of Medicine in Bethesda, Md. She is also pursuing a master's degree in library and information science at the University of Maryland, College Park. Outside her career, Tannaz enjoys singing, crafting, cooking, and spending time with her human and feline friends.
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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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