Cystic Fibrosis News Today Weekly Forum Digest

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Does Synagis Use in CF Babies Have Long-Term Benefits?

Jul 16, 2019 01:47 am | Cystic Fibrosis News Moderator

Replies: 0
A CF Foundation Patient Registry study has found that infants treated for at least one year with Synagis had lung health similar to those who were not at age 7. Learn more about this study and its findings here.
What do you think of this information?

This Program is Helping to Shape EU Rare Disease Policy

Jul 16, 2019 01:46 am | Cystic Fibrosis News Moderator

Replies: 0
Eurordis, the European alliance of rare disease organizations, is using a 10,000-member patient and caregiver database to conduct surveys on public policy. Click here to learn more.
Do you think this initiative will have a positive impact on EU rare disease policy?

Watch Out for Confirmation Bias

Jul 16, 2019 01:45 am | Cystic Fibrosis News Moderator

Replies: 0
Click here to read Tré LaRosa’s thoughts on confirmation bias and why it’s important that those with cystic fibrosis challenge their own beliefs.
Do you struggle with confirmation bias? Do you try to think outside the box and challenge your own beliefs?

Communicating with your doctor

Jul 12, 2019 08:56 am | Tré LaRosa

Replies: 0
One of the coolest things my doctor has ever done was give me his phone number. It felt like I could trust him and also gave me comfort that I could reach out if things got bad in a hurry.

Do you feel like your doctor is accessible or easily reachable? Why or why not?
What are some ways you think this could be improved?

Safe Treatment Found for Adults with Cystic Fibrosis Caused by F508del Mutation

Jul 11, 2019 04:18 am | Cystic Fibrosis News Moderator

Replies: 0

Eluforsen treatment was found to be safe in adults with cystic fibrosis caused by F508del mutations in the CFTR gene, according to a study. Read more here.
What do you think of this news?

I Feel Like a Bunch of Moving Parts

Jul 11, 2019 04:17 am | Cystic Fibrosis News Moderator

Replies: 0

Bailey Anne Vincent writes that the meds she’s on sometimes make her feel like she’s divided into parts, rather than a whole person. Click here to find out what she means.
How do you feel about your medications? Can you relate to Bailey Anne’s experience?

Disagreeing with one another

Jul 11, 2019 03:05 am | Tré LaRosa

Replies: 0
There are pockets of the internet where there is productive discussion to be had about heavy topics (Our hope is that this forum is one of those places!) In the CF community, there are definitely issues that are heated enough that people will express serious disagreement no matter what.

What do you think is the best way to express disagreement with somebody?
Where/when do you think it’s appropriate? What about inappropriate?
Do you find that it’s hard to maintain friendships once you’ve had a serious disagreement with somebody?

Sputum cultures, kids

Jul 10, 2019 04:50 am | Tré LaRosa

Replies: 0
I remember as a kid, I had a hard time coming up with sputum for CF appointments and hated doing the throat swab. Since being an adult, it’s been less of a problem.

Does your kid have trouble coming up with sputum?
Do you analyze their sputum culture results? Do you worry about them?
Does this affect yours and their experience in clinic?

Sputum cultures

Jul 10, 2019 04:49 am | Tré LaRosa

Replies: 0
I remember as a kid, I had a hard time coming up with sputum for CF appointments and hated doing the throat swab. Since being an adult, it’s been less of a problem.

Do you have trouble coming up with sputum?
Do you analyze your sputum cultures? Do you worry about them?
Does this affect your experience in clinic? Like anxiety or anything?

CF Patients & Colonoscopies

Jul 09, 2019 11:44 pm | Cystic Fibrosis News Moderator

Replies: 0
A study finds that CF patients may require a longer and more involved procedure than is standard to prepare their gastrointestinal tract for a colonoscopy. Read more here.
Did you find this information helpful?