Cystic Fibrosis News Today Weekly Forum Digest

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WCW: Olivia

Nov 13, 2019 09:21 am | Jenny Livingston

Replies: 0
It’s Women Crush Wednesday! Today we’re honored to share a little of Olivia’s story. Olivia is 24 and from Greensville, SC. Be sure to respond to her question in the comments!

️ I was not diagnosed with CF at birth. I had a fairly normal young childhood, but when I was 9 years old, I caught the flu. After about a week, I was still having a hard time leaving the couch and I still had a bad cough. That terrible cough lasted an entire year and ultimately led to my diagnosis.

️ I grew up in Ohio and went to college near my hometown for Environmental Science and Botany. I absolutely love animals and being outdoors. I always incorporate hiking, walking dogs and yoga into my exercise regimen.

️ I liked to pretend that I didn’t have CF through high school and most of college. I kept it a total secret, except for a few close friends. It wasn’t until recently that I started to have a lot of problems with CF and wasn’t able to hide it anymore. In the last year, I’ve had 5 hospitalizations (coming up on 6) and been on countless rounds of oral antibiotics.

️ While it has been a rough year, it has also taught me so much. I have learned the strength of myself and my family. I have also learned to advocate for myself and others, which is so incredibly important. I decided that I wanted to share what we go through for the people that don’t want or can’t have a voice. I recently began using my Instagram as a way to connect with other CF patients, while also educating and raising awareness. I have met and talked to some of the most inspirational, amazing people in the world. I’d like to thank you for being such an amazing, uplifting and strong community to be a part of. I am humbled.
Question: You all inspire me, but I would like to know… what inspires you?

Originally posted on Instagram.

Not Helping Is a Form of Self-care

Nov 13, 2019 08:01 am | Cystic Fibrosis News Moderator

Replies: 1

To beat survivor’s guilt, columnist Brad Dell helps as many people as he can. However, he’s starting to realize that saying no is a valid form of self-care. Click here to read more from Brad.
Do you ever felt this kind of guilt? If so, why do you think it happens? And how do you manage it? What do you do to deal with it?

Side effects of Trikafta

Nov 13, 2019 08:00 am | Suzanne Frank

Replies: 0
Has anyone experienced severe belly pain and vomiting from the Trikafta?
My son has been takin it since Friday, early Sunday started with burning in the center of his abdomen, thought it was heartburn and treated as such but it has progressed to the point where he can only eat a few bites of food and the pain is almost constant, he gets some relief with Bentyl. Docs say hang in there, it will get better and is “worth it”…not convinced since he’s losing weight. Anyone else have this? Did it pass?

For Potential CF Therapy ARV-1801, Arrevus Secures Loan

Nov 13, 2019 01:09 am | Cystic Fibrosis News Moderator

Replies: 0
Arrevus received a loan from the North Carolina Biotechnology Center to advance ARV-1801 for the treatment of pulmonary exacerbations in CF patients. Read the full story here.
What do you think of this news?

What We Should Expect from the CF Foundation’s ‘Path to a Cure’

Nov 13, 2019 01:07 am | Cystic Fibrosis News Moderator

Replies: 0

Columnist Tré LaRosa is pleased with an ambitious new research strategy announced by the Cystic Fibrosis Foundation called “Path to a Cure.” Click here to find out why.
Have you heard of this research? What are your thoughts on it?

Travel Taught Me About My Father’s Love

Nov 13, 2019 01:07 am | Cystic Fibrosis News Moderator

Replies: 0

A recent trip to Kuala Lumpur helped columnist Brad Dell overcome his past guilt and understand the reality of his father’s love. Read more from Brad here.
Do you like to travel? What is your dream destination?