Living With CFSocial Media

What’s new on the Cystic Fibrosis social media pages (@KnowCF)?

What’s new on the Cystic Fibrosis social media pages (@KnowCF)?

We are active on social media – want to know the latest news? Please follow the links to see what is new on our Cystic Fibrosis Social Media channels. Post your own comment – or just see what others are saying.

Here are some highlighted social media posts of 2017

social media feature pic jan 2017


The Wave - FB

Jaylee’s CF Love Story – Sharon’s Photography– Facebook Member Post 

One of our members wanted to share their daily routine– Facebook Member Post

#CoughforOrkambi campaign– Facebook Member Post

Chasin a Dream Foundation – Piper’s Story – Facebook Member Post

One of our members made a very moving memorial video – Facebook Member Post

One of our members is looking for information on NTM and writes: “Hi everyone. I got a phone call yesterday from my CF doctor telling me I grew a new bacteria in my sputum that was cultured at my last appointment a few weeks ago. She asked if I have ever heard of NTM or MAC or if I’ve ever grown this before? I’ve not heard of this nor have I ever grown it. She went on to tell me I had a positive result and it can be in your lungs for a long time before it shows up and since i normally grow Psuedomonas and Staph that it can be hard to tell when im having a flare if it’s caused by one of the two or the NTM which is just now being shown in my sputum.  She said I may have to go on IV antibiotics for a year… I’m confused about this new bacteria and what I’ve been around or done anything different? Can any of my fellow CFers that have tested positive for NTM give me any more information about this?”

ICYMI: An App for Cystic Fibrosis to bring Data to Market – we want YOUR help in developing this app!

Cystic Fibrosis by the numbers– Twitter member post

@girlof65roses – One of our followers shares a photo of her doing nebulized treatments – Twitter member post

Jarvis Landry of the Miami Dolphins wears Cystic Fibrosis Foundation shoes – – Twitter member post

Some of our most popular Instagram photos


Chest x-ray






Daily pills






Continuous Glucose Monitor






Pup gets comfortable with treatments






What genetic testing results look like






Remember to take insulin with sweets if you have CFRD



med reordering



How do you store your medications?




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