Embracing Changes in CF ManagementIn my last article, I discussed making accommodations for the changes CF imposes on me and many other patients. However, those aren’t the only developments we experience in life with...reactionscomments
Rare In America: What's That?The "In America survey" is now closed. We know that cystic fibrosis (CF) is more than a lung disease. It affects the whole body - gastrointestinal system, sinuses, pancreas, liver...reactionscomments
Tips To Gain And Maintain WeightLooking from the outside-in, many people might assume being chronically thin is a positive side effect of cystic fibrosis. That’s what everybody wants, isn’t it? Being effortlessly thin sounds wonderful...reactionscomments
Video: Advice To Parents Of Newly Diagnosed Kids With CFIt is not easy to learn that your child has CF. Even though the CF community has come a long way in advancements in treatment and care, having a child...reactions1comment
Where Do I Fit In?Having cystic fibrosis is challenging enough. It’s a daily cycle of medications and finding a balance in the day of when to do treatments and so forth. I am not...reactionscomments
Why Advocate?Advocacy, even for CF, used to be as foreign to me as most of the intricacies of the federal government. However, as my family faced a dire need for access...reactionscomments
Now Closed - Fatigue and Health SurveyThe 2020 Fatigue and Health survey has now closed. Thank you for your interest! We are excited to share the results with you soon. Exhaustion, tiredness, weariness... fatigue. We know...reactionscomments
My Moment Of RebellionAs long as I can remember, I have always done my best to please those influential people in my life: my parents, my teachers, and my doctor. I always strive...reactions2comments
Cystic Fibrosis (CF) Care TeamManaging treatment for cystic fibrosis (CF) is a team effort. Given the many ways living with CF can impact a person, it takes a variety of specialists to keep you...reactionscomments
Disclosing CF to Someone New Doesn't Have to Be So ComplicatedHave you ever met someone new, and instantly wondered how you would tell them you have cystic fibrosis? It’s the same plotline each time: the excitement of a new relationship...reactionscomments
Coronavirus: Be Calm And AwareThe coronavirus has been on the news more times than I can count and it’s inducing a wave of panic across the world. People are nervous and scared - and...reactionscomments
A CF Diagnosis: From One Parent to AnotherGoing back to that Friday afternoon in August 2008 is still difficult for me to do. I was fatigued. I had an 8-day-old baby that wasn't eating or sleeping. I...reactionscomments
Ask The Advocates: Unexpected CF SymptomsThere are symptoms that people with CF expect to experience, like frequent coughing and lung complications. However, CF can contribute to many other symptoms that we may not consider. We...reactions1comment
Preparing For A Colonoscopy When You Have Cystic FibrosisColonoscopies are important in helping to screen and prevent colon cancer for everyone, but especially so for those with cystic fibrosis (CF). A colonoscopy allows the doctor to examine the...reactionscomments
Dealing With GuiltHaving cystic fibrosis means dealing with hard concepts and lots of emotions. Feeling sick, scared, angry, hurt, sad, grieving those we lost, and so much more. One of the hardest...reactionscomments
Healthcare Obstacles & the LGBTQ+ CommunityEditor’s Note: LGBTQ+ stands for people who identify as lesbian, gay, bisexual, transgender, or queer. To learn more about gender identity, check out the interactive website The Genderbread Person. Have...reactionscomments
CF Diet ManagementWe asked our advocates, "What practices have you applied to CF diet management?" Here's what we heard! Response from Cheriz K I focus on gaining weight by making sure I...reactionscomments
Not So MotherhoodOver the course of my life, I’ve noticed changes to myself that - frankly - I’ve ignored. These are changes due to my cystic fibrosis that I chose to place...reactionscomments
Rare Disease Day®The last day of February is Rare Disease Day all around the world. It is a day to recognize and raise awareness about rare diseases and how they impact patients...reactionscomments
Connecting With CF PeersWe asked our advocates, "What methods do you use to connect with your CF peers? How do you feel about these methods?" Here's what they wanted to share with you...reactionscomments
