Cystic Fibrosis News Today Weekly Forum Digest

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European Commission Approves Kalydeco for Infants With CF as Young as Six Months

Dec 23, 2019 04:17 am | Cystic Fibrosis News Moderator

Replies: 0
The European Commission has approved a label extension for Kalydeco, allowing its use in infants with cystic fibrosis as young as 6 months. Read more about the decision here.
How do you feel about this news?

Self-esteem

Dec 21, 2019 03:44 am | Tré LaRosa

Replies: 2

One of the hardest things I struggle with on a daily basis is self-esteem. I actually don’t know if this is directly due to my having CF or if it’s any number of other things. I think the simplest answer is that it’s a combination of all the above. I wish I had a better answer for how I get through this, but I really don’t.
1. Do you struggle with self-esteem? Do you understand why? What types of things do you struggle with?
2. Do you have strategies for working through it? What are they?
3. Any other thoughts?

CFF Offers Emotional Send-off to Retiring CEO Preston Campbell

Dec 20, 2019 04:39 am | Cystic Fibrosis News Moderator

Replies: 0
Preston W. Campbell III, MD, will step down Dec. 31 after a long career as president and CEO of the Cystic Fibrosis Foundation (CFF). Click here to read the rest of the story.
Dr. Preston will be missed! Do you have any parting words for him as he steps down from his role with CFF?

Hospital Visits and Judgement

Dec 20, 2019 04:38 am | Bailey Vincent

Replies: 0
QUESTION: Have you ever felt judged for hospitalizations?
I posted a photo of myself “dancing” in the hospital (as it related to this column) and almost always await the negative blowback. Sometimes the Internet world- or even our closest family and friends- can make it feel like we have choice or control over our own body.
And, in some ways, we do. If I was out drinking and smoking… Sure, judge! But after ending up in the hospital after a rigorous couple of weeks of nonprofit advocacy, work (dancing), whole hearted mothering, and attending a dear friend’s wedding, I can’t help but feel it was “well earned”. Or justified.
Should I feel guilty for living, working and loving (carefully and compliantly), when my body disappoints me in the end?
I honestly don’t always know how I feel about this, but I’d love to know your (kind) thoughts and experiences!