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.
I'm glad I finally got diagnosed with bipolar disorder. It doesn't mean I'm “crazy.” Sometimes, your brain gets sick just like your lungs do.
October 16, 2020
How Scientists Are Going to Tackle a Genetic-Based Therapy for CF
Hitting the Reset Button on My Life Because of Trikafta
As many of you know, cystic fibrosis is an isolating and lonely way to live, especially for a child. I remember harrowing sadness building up in my chest as I watched my “normal” brother play outside while I stood behind the screen door because it was
time for me to do treatments or start my home IVs for the night. It's no surprise that any child growing up with CF would feel very alone. I remember feeling extremely depressed at age 8. I felt
like nobody understood me, and I couldn't be around anyone else like myself. Growing up, I continued to drown and suffocate from my own lungs. Cystic fibrosis could have honestly infiltrated my brain with sticky mucus because it truly felt like my brain was clogged with horrible thoughts and fears.
Living with a mental illness was like being on a high-speed swinging chair ride that could not slow down or turn off. This way of thinking and behavior became quite normal to me over the years
because it was so constant. I thought it was the way every person lived.
I was 17 when my friend took his own life. Around the same time, my high school dean told me I was a failure because I was going to community college, and I had no idea what I wanted to do with my life. It was a really hard time for me, but I talked it
out with my best friend and it helped so much. Someone finally noticed I was lost, and I felt seen. Thankfully, music was therapeutic enough for me to push through those negative thoughts, but my mental health problems did not end there.
In college I decided to take advantage of the counseling program offered and got help for social anxiety. I had a lot of issues with asking for help at a store or ordering food
from a menu at places like Chipotle. My CF team and I had discussed these issues with anxiety, and they helped me link with a psychiatrist who worked in the same hospital as the CF center.
Yet, it wasn't until 2018 that I got my official diagnosis of Bipolar Type 1 because the year before I suffered through mania for five months -- it was more than just depression. My symptoms were irritability and impulsiveness. I would be crying and laughing
at the same time.
I isolated myself from friends as they distanced themselves from me.
Mania had also given me so much energy. After four-and-a-half months, I realized I was not in the right state of mind -- a hard realization to grasp while suffering from mania. I decided to call my health insurer and ask them for places I could go get
I ended up at an intensive outpatient clinic in New Jersey that changed me for the better. I was officially diagnosed with bipolar, and I could take the steps I needed to slow down the swinging chair ride. For at least two months, I was in group therapy
five days a week for six hours a day. I was put on Trileptal®, and I was taught how to deal with my emotions in a healthier way. I was also informed that antidepressants were most likely enhancing my mania and the better medications for
my body chemistry were mood stabilizers.
Through this whole process, I was scared of what others would think of me, but in the end there is nothing to be ashamed of when it comes to getting treatment for mental health.
I still get shamed by people, but I am living my happiest life because I got the help I wanted and needed. I advocate for my feelings and listen to what my head is telling me. Nobody can tell me I'm “crazy” because I know I am not. The brain gets sick
just like our lungs get sick.
I am open with my CF care team, and they are supportive of me taking care of myself. They continue to work with me, figuring out what medications do and don't work with mood stabilizers. They check in on my feelings
and let me cry about whatever I am going through. I am so thankful I continue to have CF teams that are super supportive from my time living in New York and in Arizona.
Humans need to realize that it is very much OK to get help for your mind because the brain controls your entire body. Helping your brain is the bravest thing one can do. Getting help is the only way to fix your issues and live a healthier life. There
is nothing to be ashamed of. CFers are not only resilient physically, but also the toughest mentally. We can prevail through so much. Because I got help, I am now on a very relaxing, slow, swinging chair ride with a nice subtle breeze, enjoying a
vanilla cone with sprinkles. And when the ride is out of order again, I know when and how to call maintenance. I hope you can enjoy the ride you are on.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Corrine graduated from the College of Staten Island in Staten Island, New York, with a bachelor’s degree in English writing and a minor in psychology. Corrine plans to go back to school to obtain a master’s degree in social work, which is something she
will be able to do now that she takes Trikafta®. She enjoys working out, playing and training with her new puppy, and reading. She is very interested in politics and trying to figure out how she can make the world a better place with compassion
and radical love. Corrine also has been sharing her journey through the pandemic on a new podcast called, “The Rin_y0 Show: Cystic Fibrosis Through a Pandemic,” which can be found on Podbean, Spotify, and iTunes, and she also has been sharing on
Instagram. Corrine and her family have been hosting a fundraiser twice a year for the Cystic Fibrosis Foundation called Corrine’s Pride, which was originally a 5K that is now a “Thirsty Thursday.” She plans to eventually take over the fundraiser
and return to raising funds via a 5K.
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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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