Fionna

Engineering student, A-LiNK patient co-chair, she/her

[ICN PAC @ICNPatients]

"If you were to ask me today, who I am. I would tell you that I am resilient and a fighter. That I am an advocate and a student and nature lover and a reader. But most of all, I am so much more than just a runner" Caitlyn finding her identity again #icncc24s

[Fionna @fionna_kopp]

New long run Saturday hack for when the motivation to start is lacking. Go to the gym with a nearly dead phone, plug it into the treadmill, start phone updates, and then you are stuck until your phone finishes updating and charging. 6+ miles ✅

[Flat Jennie (Jennie David-Rodgers, Ph.D.) @Flat_Jennie]

Medical traumatic stress impacts our pediatric GI patients and continues to emphasize the critical need for peds GI psychosocial integrated care #NASPGHAN23 @pedsgastropsych

[Kimberly Braly @kimbralyRD]

We are excited to share that EATS for IBD™ is LIVE!
https://t.co/CF9EiWqaCg
#IBD

[Fionna @fionna_kopp]

In engineering class talking about different types of data and ways we encode information for applications in ML and I’m the only one that knew what EHR data stood for

[Fionna @fionna_kopp]

“SCD pancakes” auto-corrected to “sad pancakes” today on my phone, but my SCD pancakes are the last thing from being sad #IBDAID #SCD

[Fionna @fionna_kopp]

#NYTSpellingBee repeated a pangram earlier this week from last summer and it made me sad. That’s all

[Fionna @fionna_kopp]

@mahaparakala @MondayNightIBD @AaronBlocker_ @shiralikesdogs @ICNPatients This part of transition came with hard conversations at home and in clinic. It was helpful to talk about what I wanted my QoL to look like. What did I want to be able to do physically and what did I envision my future to look like? Providers can support & encourage these topics!

[Fionna @fionna_kopp]

@mahaparakala @MondayNightIBD @AaronBlocker_ @shiralikesdogs Definitely agree Maha! Being exposed to other patients my age who were comfortable talking about IBD through @ICNPatients helped me first gain more confidence to talk in my appointments

[Aaron Blocker @AaronBlocker_]

This is a big one. The transition from not making your medical decisions to being the decision maker so abruptly is challenging and scary. #IBD #MondayNightIBD

[Fionna @fionna_kopp]

@mahaparakala @MondayNightIBD @AaronBlocker_ @shiralikesdogs This was difficult psychosocially and I wish there had been more support from my care team in both learning how to make medical decisions and this family aspect. I’ve previously talked more about this on a @bowelsounds podcast: https://t.co/nYr8Ps7IlL (2)

[Fionna @fionna_kopp]

@mahaparakala @MondayNightIBD @AaronBlocker_ @shiralikesdogs One of the hardest parts for me was actually while I was still in peds—the transition to making my own medical decisions. I simultaneously wanted to make my own decisions and wanted to feel that my parents supported my decisions (1)

[Fionna @fionna_kopp]

Spent my morning watching and presenting at ICN LOCC and my afternoon at a robotics symposium. Beyond grateful and fulfilled to be part of both of these worlds! @ICNPatients #ICNCC23S

[ICN PAC @ICNPatients]

"There is no blueprint for what remission should or shouldn't look like"--fantastic insight from Caitlyn on how providers can support patient goals!! #icncc23s

[ICN PAC @ICNPatients]

"If you feel like your provider isn't listening, it's okay to say 'I feel like you're not hearing me,' and we appreciate that feedback.--Dr Rachel Bensen sharing the provider perspective on working with patients to meet shared goals #icncc23s

[ICN PAC @ICNPatients]

"As I have gotten older and taken more control of my health, the support I need from my parents has changed. It can be challenging, but it helps to communicate with them while also knowing they have my back"--PAC members share how they navigate different support systems #icncc23s