Cystic Fibrosis News Today Weekly Forum Digest

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Experiences with care centers – Negative

Apr 08, 2019 03:53 pm | Tré LaRosa

Replies: 0
As much as we wish it were otherwise, we have poor experiences at some care centers. On the other hand, we have some fantastic experiences at some care centers. I don’t want this to be a spot to attack care centers, so please refrain from naming your center. But I want this to be a place to offer genuine critiques (again, please no naming specific centers) for how centers can be better.

What are some negative experiences you’ve had? (This can be regarding normal visits, or it can be regarding hospitalizations. Anything negative, honestly.)
How could this experience have been corrected or made better? Or even prevented?

4 Things People Should Know About Cystic Fibrosis

Apr 07, 2019 11:41 pm | Cystic Fibrosis News Moderator

Replies: 0
Click here to read about four of the most common misconceptions non-patients have about cystic fibrosis.
Did any of these misconceptions surprise you? What other misinformation have you come across when speaking to non-patients? Do you usually take the time to correct misinformation when you hear it?

Amphotericin Holds Promise as Treatment for All CF Types, Study Shows

Apr 05, 2019 07:47 am | Cystic Fibrosis News Moderator

Replies: 0
Amphotericin B, a widely used antifungal medication, may be a potential treatment to restore lung mucus properties in CF patients, a study shows. Click here to learn more.
What are your thoughts about this study and its findings?

CF Patients in Canada Have Better Lung Function Than in France, Study Says

Apr 05, 2019 07:46 am | Cystic Fibrosis News Moderator

Replies: 0
Canadian CF patients have better clinical status but more frequent glucose metabolism alterations than French patients, according to a study. Click here to learn more about this study and its findings.
Does this news surprise you?

Doctors and Scientists Who Work with the CF Community Are Just Like Us

Apr 05, 2019 07:44 am | Cystic Fibrosis News Moderator

Replies: 0
While in college, Tré LaRosa had opportunities to work alongside CF doctors and researchers and the experience taught him that they’re people “just like us.” Read more from Tré here.
Do you agree with Tré? What is your impression of doctors and researchers?

Virus that Infects Bacteria Lets P. aeruginosa Thrive, Study Finds

Apr 05, 2019 07:43 am | Cystic Fibrosis News Moderator

Replies: 0
Click here to read about how Pseudomonas aeruginosa, the most common bacteria found in cystic fibrosis (CF) patients, uses a virus to go unnoticed by the immune system.
What are your thoughts on this news?

The language we use (part 2 – CFers talking to other CFers)

Apr 04, 2019 09:56 am | Tré LaRosa

Replies: 0
I’ve realized I use extremely different language in different contexts. In my relationship with other CFers, I joke more and use more explicit language.

Do you talk to other CFers? Why or why not?
Do you notice the different language you use with your CF friends?
What are some of the hallmarks of the language you use with other CFers?

Side note: We’re hoping this forum can be an opportunity to meet friends in the community as well.

The language we use (part 1 – CFers talking to careteam)

Apr 04, 2019 09:42 am | Tré LaRosa

Replies: 0
I’ve realized I use extremely different language in different contexts. In my relationship with doctors, I use technical and medical language.

Do you notice the different language you use with your caretakers?
What are some of the hallmarks of the language you use with your care team?

College Student With CF

Apr 04, 2019 08:40 am | Jacob Stolzenbach

Replies: 0
Hello, My name is Jake. I am a 24 year old cf patient who lives in Baltimore. I go to college in the area. Currently studying journalism, and questioning what I will be doing after I graduate in May. I have had CF my entire life. After I Recently got the flu I was I would be hospitalized- luckily that didn’t happen.