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 years of being in a deep depression, one little revelation from my therapist made all the difference in how I faced the traumas in my life.
Autumn Dawson Mathis
January 30, 2020
Showing Strength By Asking for Help
Trikafta Shattered My Negative Attitude and Expectations
To be completely honest and transparent, I have never been the type of person who writes in a journal or diary (much less a blog!). I never wanted anyone to know what I was thinking or feeling. I like to think of myself as a strong person, but
we all go through times in our lives that completely break us. I hope that sharing my struggles -- and what has helped me -- will help others.
People living with the daily health struggles of cystic fibrosis also deal with so many other issues. It’s easy to get jaded and blame ourselves. We have daily battles with depression, social pressures and anxiety, family issues, the loss of loved ones,
starting and keeping personal relationships, etc. I’m sure you can add to the list, because I can! Recently, I received healing words that I want to share with you.
Having a diagnosis with CF so late in life really threw me a curveball. To say that it was life-changing is an understatement. It ultimately led to my first marriage failing. I still get emotional talking about that period in my life.
At the time of my diagnosis, I realized that I needed to seek professional counseling, but it seemed that every psychologist and therapist I contacted had the same work schedule as me, didn’t accept my insurance, or was not accepting new patients. I didn’t
want to burden my friends with how I was feeling. My husband at the time told me to get over it and get back to my normal life. My parents couldn’t handle their own feelings much less bear to hear about mine. I felt like I was barely keeping it together,
and I slipped into a deep depression.
I tried to find ways to distract myself and forget about CF as much as I could. Music has always been an escape for me. I would “run away,” driving for hours just listening to a playlist of songs that took me somewhere else. I pushed down my feelings
and emotions, became pessimistic, and muddled on for years.
I’m an only child in a small family. I had one friend closer than a sister, Michelle. Michelle and I were always together and talked daily. She was there and available for everything: the good times, the bad times, hospital stays, vacations, etc. Two
years ago, Michelle was diagnosed and quickly died from stage 4 cancer. That was my chance to be by her side, just like she was always by mine. I was holding her hand as she died.
A few days later my dad fell off a ladder and suffered traumatic injuries requiring surgery and a long recovery. I stayed with my parents to help my chronically ill mom with his care. During this time my uncle had a stroke, and I had to assist my aunt
in getting him care and placing him in an appropriate facility.
With so many things happening so quickly, I felt broken and very overwhelmed. There were nights that I completely broke down in my current husband’s arms, because I didn’t think I could handle my grief and being pulled in so many directions. There was
no time or chance to deal with the traumatic loss of my friend. I had to push down my emotions just to accomplish what I needed to do. I knew that it was time to get professional help and deal with my grief when I still cried every day and at just
the mention of Michelle’s name almost a year later.
I started feeling like I had let all these repressed feelings and grief build up too long. I had not dealt with my late diagnosis of CF many years ago and the more recent loss of my best friend Michelle. I really felt like I was going to explode.
I started talking to the social worker/therapist available to me at my CF care center. Shaina was exactly what I needed. She gave me exercises and activities to get to the bottom of my feelings and helped me understand that it’s OK to cry when I need
At one session, Shaina said something profound: “Autumn, have you ever stopped to think about the fact that none of this is your fault?”
This is not your fault. Those words hit me like a ton of bricks. I think I even stopped breathing while I processed that. I was speechless.
Of course, I had never considered that CF is not my fault. Most of the bad things that happen to us or our loved ones are not our fault.
Fellow CF community blogger Jenny Livingston also commented on this topic in “Real Talk Tuesday: Stop Blaming Yourself!” She talked about the innate tendency to want to assign self-blame and guilt. I even find myself (or my family/co-workers) doing this
when I get sick. We have to stop doing this to ourselves and others.
Since that session with Shaina, I have a better attitude, and I don’t cry daily. Of course, I still experience sadness from time to time, but I feel that I am better equipped to handle what comes my way.
I have always used music to escape and distract me -- a beautiful drive on a sunny day, with the sunroof open, windows down, and the music loud. But music can also be therapeutic and inspirational. Have you ever had a song touch your heart? Maybe you
had a melancholy song make you sad? Your favorite song made you get up and dance?
We all need someone to point out how strong we are or remind us what we are capable of. I was sitting on the couch at 3:30 a.m. in the darkness of my den, watching TV, unable to sleep because of the steroids I was taking. “Rainbow,” a song by Kacey Musgraves,
was being sung by a contestant on a show. I had never heard this song before. The lyrics touched my heart, and I found myself sobbing. Sometimes you need a message of hope in dark times or when you have weight on your shoulders.
“Let go of your umbrella, ‘cause darlin’, I’m just tryin’ to tell ya That there’s always been a rainbow hangin’ over your head.”
Do you have a go-to song? “Rainbow” is now mine. It helps me remember I’ve always had the strength inside to deal with any struggle.
Just remember: This disease and most of the things that happen to us are not our fault.
Yes, we still have to deal with the daily grind of pills, meds, treatments, pain, depression, doctors, hospitals, etc.; but, we don’t have to add on the extra emotional burden.
It’s not easy, but try to find inspiration, escape the pessimism, and remember how strong you are.
Autumn Dawson Mathis
Adult with CF
Autumn is 40 years old and currently lives in Atlanta, where she was born and raised, with her husband, Joey and rescue chocolate lab, Lexie. Autumn works as a physical therapist assistant and a trained rehab instructor at her local Pilates studio, and
enjoys going to Braves games, concerts, and spending time with friends and family. Diagnosed with cystic fibrosis later in life, Autumn is grateful for research and funding for drugs like Kalydeco® that have kept her healthy.
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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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