Posted by Sami Kennedy on March 31, 2015
A record seven gutsy patient advocates in ICN's Patient Advisory Council - PAC, "pack" - attended the Community Conference. We tweeted live at #ICNCC15s all the way through - so please check out our feed!!
The Patient Voice is already strong on Twitter. For a week leading up to the conference, Alex, Bianca, Christian, Isabelle, Jennie, Randa, and I tweeted once a day to provide a glimpse into how IBD factors (or does not factor, in some cases) into our days. We made special reference to the key drivers of remission took center stage at the Community Conference and form the foundation of ImproveCareNow's work:
Jennie described challenges that impede her access to and communication with her doctor.
Randa described how proactive care allowed her to take better control of her ulcerative colitis.
Alex questioned why it can be so hard to find the right medication - and shared his optimism that more accurate diagnoses and research can change the game!
Bianca shared how less-than-optimal nutritional intake has impacted her - and made it difficult for her to grow at the same rate as her peers.
Isabelle emphasized the relevance of compassionate care to psychosocial health.
Finally, Christian described how a food journal has improved his ability to self-manage his IBD.
And, I shared how my pill case makes it easier for me to stay adherent at college and on-the-go!
We hope you'll join the conversation on Twitter now and in the future!