Cystic Fibrosis News Today Weekly Forum Digest

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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?

The Story Behind Awareness

May 26, 2020 02:23 am | Cystic Fibrosis News Moderator

Replies: 0
Lara Govendo believes that CF Awareness Month must move beyond sharing factoids and into a dialogue in order for the world to deeply understand how CF changes people. Click here to find out what she means.
Do you agree with Lara? Why or why not?

On Not Being a Pre-existing Condition

May 25, 2020 12:45 pm | Kevin Schaefer

Replies: 1

Hey everyone! Congrats on making it through another week of quarantine.
For a little inspiration, check out Bailey’s latest column. She writes about the empowerment that comes with having a pre-existing condition like CF. Whereas society tends to view people in rare disease communities as weak, Bailey flips this concept on its heels.
This passage in particular sticks out to me:
“Here is what my pre-existing condition has made me fight through physically already: The removal of my appendix, gallbladder, large intestine, colon, uterus, and more; hemorrhaging lungs, bleeding colons, and sinus excavations; two G-tube surgeries, two J-tube surgeries, implantable cardioverter-defibrillators, intensive care units, pacers and pyloroplasties, fundoplications and infections … and on and on and on.
Would you want to go up against that?”
Hope you all enjoy this one.
Do you have any takeaways from this column? Do you agree that having cystic fibrosis can be a source of empowerment?
Have a safe and relaxing weekend everyone!

How Trefoil Proteins Act to Thicken Mucus, Common to CF, Seen in Study

May 24, 2020 06:51 am | Cystic Fibrosis News Moderator

Replies: 0

Researchers have identified how trefoil proteins bind to sugars in mucin glycoproteins, thickening mucus in lungs of people with cystic fibrosis and other ills. Learn more about this research here.
Do you have any questions about these findings?

CF Columnist Publishes New ebook

May 22, 2020 08:55 am | Kevin Schaefer

Replies: 0
Hey everyone! Hope you’re all doing well.
I wanted to let you all know that our very own Bailey Vincent recently published a new ebook! You can download it for free here on her website. I read it the other day, and it’s fantastic.
This book is part memoir, part novelization/stream of consciousness. It’s not at all filled with medical jargon or scientific discussions about CF. Rather, it’s a personal narrative about sickness, family, relationships, and more. Hope you all check it out. Something to read during Memorial Day weekend!
Do we have any other writers here? Do you also tackle personal narratives in your writing?