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?

Using TeleMed

Apr 20, 2020 02:00 am | Kevin Schaefer

Replies: 0
Hey everyone! Congrats on making it through another week of quarantine.
So I wanted to ask you all about using TeleMed for medical services. TeleMed is a popular resource for live medical answering services for patients and healthcare providers. Especially with the COVID-19 pandemic, I was wondering how many of you are using TeleMed for medical appointments and inquiries. Or maybe you use another provider. Either way, it seems like many rare disease patients will have to become more reliant on virtual medical services for the time being.
Do you have experience with TeleMed? What are some pros and cons?

On Not Being a Pre-existing Condition

Apr 17, 2020 02:00 am | Kevin Schaefer

Replies: 0
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!