Cystic Fibrosis News Today Weekly Forum Digest

Join the discussion! See below for the latest topics and conversations about CF taking place in our forums. Your voice is needed!

New to our forums? Register here.

CF Patients Improve Lung Function with Elexacaftor Combo, Data Show

Jan 02, 2030 04:44 am | Cystic Fibrosis News Moderator

Replies: 0

Adding elexacaftor to tezacaftor and ivacaftor leads to marked improvements in lung function and quality of life in people with cystic fibrosis, data show. Read more about it here.
What do you think of this news?

Spinal Tap Time: Preparations and Predictions

Jul 16, 2020 06:19 am | Bailey Vincent

Replies: 0
Yesterday I had a lumbar puncture procedure to test what’s been going on with my spine, and it means I have to do moderate bed rest for the first 24 – 48 hours or so.
The last time I had this type of test, I ended up getting a spinal fluid leak really quickly. It didn’t go away until I was hospitalized and patched up with a “blood patch.” This is my third lumbar related puncture in 2020, and I’m starting to feel like an actor from This Is Spinal Tap.
I am often lax about not wanting to “over think” procedures. I follow rules, but don’t want to make something feel larger than it is. If a doctor warns about the “down sides”, I always think positively (“That won’t happen to me”), and go on with my day
But sometimes the lassez-faire approach can backfire, and you end up with complications despite your best intentions!
QUESTION:
What is one time when the “worst case” medical scenario actually happened to you?
How did you handle it, and did it make you more scared or cautious the next time?

Rage Biotech Opens With Goal of Treating CF and Similar Lung Diseases

Jul 16, 2020 04:58 am | Cystic Fibrosis News Moderator

Replies: 0

Rage Biotech, building on research done at Australian universities, will focus on a protein that amplifies inflammation to treat inflammatory lung diseases. Read more about this research here.
What do you think of this news?

CF Study Finds P Aeruginosa Mutations May Lead to Biofilm Growth

Jul 15, 2020 06:57 am | Cystic Fibrosis News Moderator

Replies: 0

Mutations that cause P. aeruginosa to lose motility are linked to higher production of complex sugar molecules involved in biofilm formation, a study says. Find out more here.
What do you think of this news?