Orkambi has simply changed my life…a Cystic Fibrosis reflection
A member of our community with Cystic Fibrosis reflects on two years since starting Orkambi, a medication used to treat Cystic Fibrosis. This post was originally published on our forums by member RubyRoseLee. Two Years Ago “I’ll never forget the emotions I was feeling that morning. I had just gotten …
Tamika Grubbs RN Here to Help our Cystic Fibrosis Community!
Hello, my name is Tamika Grubbs and I am a CF nurse consultant with over 4 years of experience. In the past, I served as an Adult CF coordinator for Central Florida Pulmonary Group, CF Clinical Regional Specialist and CF Manager for Kroger Specialty Pharmacy (formerly TLCRx Pharmacy). I am …
Fertile Areas for Experimentation: a New App for Cystic Fibrosis!
One of our Cystic Fibrosis Digital Opinion Leaders speak about the need for an app that could help patients record information and reveal correlations. From one of our Digital Opinion Leaders! I would love an app that allows me to record information that I feel might be important so I …
Amber’s Cystic Fibrosis Miracle
Introduction My name is Amber Newman and I’m twenty-five years old, soon to be twenty-six. I was diagnosed with CF when I was seven months old due to failure to thrive. I’ve been a member at CysticFibrosis.com since I was twelve years old. I’ve been able to connect with an …
Cystic Fibrosis treatment: Foam roller benefits – a member blog
I recently received some questions about foam rolling, as a result of a personal blog Top remedies or tools for CF related ailments, which listed foam rolling as one of my favourite CF remedies. Questions such as “What is a foam roller?” and “How does one use it?” – Here is a bit more …
Member post: goals and managing expectations with Cystic Fibrosis
A little story: When I was 12, I participated in a big folk dancing competition through my school. It consisted of several hundred participants and we danced non-stop for hours in front of a selection panel. An elite group of dancers would be chosen to go on a week-long vacation …
First Winner! Probiotic/Prebiotic Recipe Contest (Cystic Fibrosis diet)
This recipe and picture were submitted by cysticfibrosis.com member haimapatel. She is the first winner of the Probiotic/Prebiotic Recipe Contest and will receive a $50 Amazon gift card. The recipe looks easy to follow and delicious! Please give it a try. You can thank her and ask her questions in …
Fecal Microbial Transplants and “Gut” by Guilia Enders
Cystic Fibrosis symptoms manifest in many ways, including gastrointestinal problems. Over the years, CysticFibrosis.com member and moderator LittleLab4CF has helped many people with GI problems in the forums and through private messages. His insight and advice come from years of personal experience with GI disease and from being a scientist. …
It’s Been a Good Life Dad: My Son’s Struggle with Cystic Fibrosis
It’s Been a Good Life Dad: My Son’s Struggle with Cystic Fibrosis by Jerry E. Hendon Author Jerry Hendon writes: I have written a book about my son, Kevin, who died of cystic fibrosis in 1986 at age 18. The book, It’s Been a Good Life, Dad: My Son’s Struggle …
Sharktank: Jim Caldwell
My name is Jim Caldwell and I would like to introduce myself to this group. I am the president of another cystic fibrosis group called Sharktank Research Foundation (sharktank.org). I’ve been involved with Sharktank since 1999. I began studying cystic fibrosis seventeen years ago through Sharktank, shortly after my daughter was …