As part of the 2024 Digestive Disease Week Conference (#DDW2024), I was honored and humbled to be a part of the ‘Bridging the Communication Gap for Better IBD Care: A Collaborative Approach’ presentation hosted by Monday Night IBD, SAIA, COGI, Connecting to Cure, and IBDMoms. Representing SAIA as a Crohn’s patient advocate at this event, I shared the experiences and challenges my family and I faced in the first year I was diagnosed with Crohn’s disease as a pediatric patient (age 17):
💪🏽The uncertainty of IBD and the difficulty processing a chronic illness mentally was one of the first experiences after diagnosis: My parents bottled their emotions because it was tough on them too, as caregivers. Among South Asian communities, #mentalhealth & #chronicillness are not widely talked about. We also did not have a community in that we did not know any pediatric patients at the time who came from a similar cultural background.
💪🏽The importance of self-advocacy & maintaining transparent communication between clinicians and patients was another experience: I was blindsided when not too long after starting a second #biologic, I was advised by my pediatric gastroenterologist at the time, to switch back to the biologic I was originally on, but at a higher dose. The decision was made suddenly by consulting an unknown third party. Hence, I decided to advocate for myself by getting a second opinion. This decision helped me to stay in remission for over 7 years now.
💪🏽The discovery that academic care centers, as opposed to private community clinics, are better equipped to handle pediatric to adult transitional care was the other experience: Access to various healthcare professionals at one place, e.g., dietitians, psychiatrists, urgent or emergent care, and experts in the niche field of IBD care are among many reasons to find larger academic care centers with specialized departments for IBD care.
As a current medical student and patient advocate, I hope to address some of these challenges in my own medical training & continue representing the patient voice within SAIA / IBDesis!