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.
After finally feeling like I had the right medications to manage my anxiety and depression, I started Trikafta®, and everything changed. Struck with fatigue, all I wanted to do was stay in bed.
May 14, 2020
How CF Steered Me Toward a Career in Music
Questions to Ask Yourself When Considering College With CF
I've been thinking of my life after Trikafta® as a series of pros and cons ... like on “Friends” when Ross made a list to figure out why he should/should not date Rachel. Ross needed to decide if he wanted to be with Rachel or Julie. The first thing that Ross had on Rachel's con list was, "I guess she could be nicer to her friends." The next few cons were that "she's terrible at her job," "she's a little spoiled sometimes," and “she can act kind of stuck up sometimes."
Trikafta is exactly the same. For most people, there are a lot of pros because unlike Rachel, Trikafta is VERY good at her job. But for a lot of people, she gets a little crazy and causes some trouble in the form of side effects. Weight gain, mental health issues, acne, rashes, sinus inflammation -- there's a long list of adverse reactions that I've had from Trikafta.
The most influential, however, has been an increase in my anxiety and depression and instability with my mental health -- something that I thought I had under control.
I was a pretty healthy kid. I danced, did karate, and was very active until I was 18 -- a year that was followed by frequent hospitalizations. Since then, I've gone through long periods of good health, bad health, noncompliance, ups and downs, sickness, sinus surgeries, FEV1 down to 38 percent and the like. A lot of patients have similar stories, oftentimes worse.
When you're face-to-face with your own mortality and add frequent breathing treatments and countless medications, it comes as no surprise that many adult cystic fibrosis patients have had issues with anxiety or depression at one point or another. I started medication for my mental health in 2004, but if I had to pinpoint when it all started, it would be the year I left for college.
Before college, my parents pretty much controlled what I did, and I know that's the case for a lot of people -- not just people with CF or other chronic illnesses. For example, when I lived at home, my mom was the one who chose what to make for dinner, what time we ate, and then she was the one who cooked it. My mom still did my laundry (thanks, mom!), and she still did the grocery shopping. She's the one who cleaned the house and ordered my medications. These are things I didn't even really think about before I moved out; they just happened (and yes, I realize how lucky I was!). For healthy, "normal" people, things like this might have been enough to invoke a little bit of anxiety once they realized they had some additional responsibilities on their plate in addition to classes, school work, working part-time, and still trying to have a social life.
For someone with cystic fibrosis, autonomy was a whole other ballgame. What started as, "What time would be best to do my treatments?" and "I have to do my therapy first," eventually turned into, "Will skipping my meds really matter?", "I can do it later," or "I'll do it twice tomorrow to make up for it," but I never did.
I had a pretty mild case of CF my entire childhood, so it took a while for the consequences of not doing my treatments to sneak up. In February 2003 of my senior year, I was admitted for the first time since I was diagnosed at age 1. While I was there, my doctor made me speak to a child psychologist. We had never really discussed my non-compliance, but he obviously knew. Adults with CF were becoming more common, and this wasn't his first rodeo with a non-compliant teenager.
To say that the psychologist and I didn't "jive" was an understatement. What she did help me with, however, was identifying that I was experiencing depression and anxiety and that a transition to college was huge for anyone, let alone someone with a chronic illness. I began recognizing the symptoms I was having and realized that I had been attributing them to other causes. Sleeping too much during the day? I must have been tired from staying up late. Not interested in socializing? I just wasn't in the mood. Forgetfulness? I had a lot going on. Difficulty concentrating? My brother was diagnosed with attention deficit hyperactivity disorder. Maybe I had it too.
I've seen many other psychologists, social workers, and psychiatrists since 2004, but I feel like it was just within the past year that we finally got my medication "cocktail" combination perfect. I was on the correct doses of Cymbalta®, Wellbutrin®, and Seroquel® to balance out my depression and my anxiety and manage my fatigue. And then BAM ... I started Trikafta. Since starting the drug on Dec. 3, my most common side effect was fatigue -- I'm talking about sheer exhaustion. As time progressed, however, I realized that I was struggling with an increase in depression, which made me tired. Con for Trikafta.
A day in bed turned into two, and by the time I had entered my third month on Trikafta I was experiencing weeklong periods of staying in bed, cuddling with my dogs, and not wanting to go anywhere or do my treatments.
Why was everyone talking about having so much energy with Trikafta? All I wanted to do was stay in bed.
Luckily my lungs were stable because of the drug (pro for Trikafta), but skipping my treatments is not something I wanted to fall back into. To help with the fatigue and my motivation after starting Trikafta, my pulmonologist suggested that I decrease my dose of Seroquel. I was on Seroquel, in part, to help me sleep and apparently Trikafta could cause an increase in absorption and effectiveness of the drug, which could explain the drowsiness and lethargy in the morning. As advised, my psychiatrist cut the dose of Seroquel in half. It helped a bit, but after a month, we decided to discontinue it altogether because I was still feeling overtired. And then the panic attacks and anxiety hit! Con for Trikafta.
To temporarily alleviate the anxiety, my doctor has introduced Xanax® until we balance out my antidepressants. I don't want to be on benzodiazepines long-term because I want to conceive in the near future, but we decided it's best to control my anxiety while we get a handle on changing the other medications around. I've since discontinued Wellbutrin, and I'm trying Rexulti® instead, which is used to "boost" antidepressants. So far so good, but I'm being cautiously optimistic. I'm trying not to think about it too much, but part of anxiety is waiting for it to rear its ugly head again.
I'm hopeful that we'll figure out the right balance again, but I can't help but resent Trikafta for it. How could something that makes me feel so great physically make me feel so crappy mentally? Is it just me or have other people felt the same? I know there are others who have had similar thoughts and experiences, but it's hard to not feel isolated and alone. Con for Trikafta. Luckily my husband has been really supportive, but I know it breaks his heart that I've been struggling with something I've been so excited about.
Don't get me wrong -- I'm not trying to complain. Trikafta has done amazing things for me, and I am forever grateful. Pro for Trikafta. I don't cough, I can climb stairs without being winded, and the stability I have to fight colds and viruses is amazing in itself. It's simply a medical miracle! And quite frankly, typing out the downsides of the drug really makes me feel like a spoiled, picky brat.
The benefits of me being on Trikafta SEVERELY outweigh the negatives, but that doesn't mean the negatives don't exist (and I haven't even gotten into the acne, weight gain, and hair-growth on my face!). Con for Trikafta, haha.
The thing is -- just like Ross -- we have a right to be frustrated when things are complicated. But luckily, we have an entire community who understands. But when someone outside of the CF community asks me how my new medication is going, instead of saying, "Great," what I really want to say is, "How much time do you have?"
But instead I say that it's life-changing, because it is.
Adult with CF
Lauren is 35 and was diagnosed with CF when she was one year old. She was in the hospital for her very first birthday but was extremely healthy growing up and wasn't admitted again until she was 19. Lauren grew up in upstate New York with her younger
brother. She earned her bachelor’s degree at Manhattanville College and went to grad school at the University of South Carolina to study clinical psychology. Lauren has lived many places in her adult life, including Ireland and Salt Lake City. She
grew up dancing and singing and loves to attend karaoke when she can. Lauren lives just outside New York City in Westchester, N.Y., with her husband, Paddy, and her two fur-babies, dogs Vincent, 13, and Cash, 2. She loves being a part of the CF community
on social media and meeting fellow CFers on Instagram. Her handle is @irishgt413.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails