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... By Misty Roussa3 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments1 comments
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... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Cheriz K.5 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Marieliz Landa2 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
Time Traveling With TrikaftaMuch like the entire cystic fibrosis community, I was eagerly awaiting my arrival of the recently approved CFTR modulator: Trikafta. Following the published research, community hype and amazing progress stories... By Janeil Whitworth3 min readBookmark for laterReactions 0 reactions Comments1 comments
Tips for Overcoming DehydrationFor those of us with cystic fibrosis, our bodies put us through a lot every day because of those two mutated CFTR genes. Why is it that something that seems... By Megan Barlow3 min readBookmark for laterReactions 0 reactions Comments0 comments
My Port Gives Me a Piece of FreedomThere are moments throughout my day living with cystic fibrosis that I sit back and watch my freedom slip away. Like water running through my fingers, there’s no stopping the... By Janeil Whitworth4 min readBookmark for laterReactions 0 reactions Comments0 comments
What Lifestyle Changes Has Cystic Fibrosis Caused?We asked our advocates, "What changes have you had to make to your life/lifestyle because of cystic fibrosis?" Here's what they wanted to share with you. Response from Cheriz K... By Editorial Team 5 min readBookmark for laterReactions 0 reactions Comments0 comments
The 6-Foot Rule for Cystic FibrosisIn early 2019, a movie began showing in theaters across the country called Five Feet Apart. The previews that aired on television showed two teenagers falling in love. Both of... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments6 comments
The Other 10 PercentWhen I learned about Trikafta, I was thrilled and moved to tears. It was a bittersweet moment for me. I was happy beyond belief for the CF community. I was... By Marieliz Landa2 min readBookmark for laterReactions 0 reactions Comments0 comments
Clinical Trials as a Treatment OptionWhen you’re dealing with a major health issue or condition, it’s helpful to know that in addition to standard treatment, complementary or alternative medicine, clinical trials may provide another treatment... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
10 Things You Should Know About Clinical TrialsThousands of clinical trials occur each year. Learning about clinical trials can feel like you are learning a new language. The good news is that there are lots of resources... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
What is a Metered-Dose Inhaler and How Does it Work?If you take any inhaled respiratory medications, chances are you take them with a metered-dose inhaler, which is also referred to as an MDI. An MDI is a pressurized canister... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
The Clinical Trial Consent Form: Understanding Your Rights & ResponsibilitiesInformed consent is the term that signifies a person has been given information regarding all possible consequences for a treatment, including both potential risks and benefits. While informed consent frequently... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
Winter WorriesBrrrrrr. It’s freezing outside. Whenever the winter season comes around, I think why in the world do I not live in a warmer climate? I don’t like the cold and it... By Cheriz K.3 min readBookmark for laterReactions 0 reactions Comments3 comments