Originally published on February 2nd, 2021 on the Crohn’s & Colitis Foundation’s IBDVisible Blog: https://www.crohnscolitisfoundation.org/blog/being-south-asian-american-living-with-ibd
By: Tina Aswani Omprakash
I was 22 years old when I was first diagnosed with inflammatory bowel disease (IBD). I felt very isolated as a young South Asian American woman, unable to relate to those around me who were healthy and able-bodied. Even though this disease runs in my family, there was very little knowledge about Crohn’s disease or willingness to discuss my journey. Not only was my diagnosis delayed from my teenage years, due to a lack of understanding of extraintestinal manifestations (in my case, joint pains, ocular inflammation, dermatological issues), but once I did get a diagnosis, many healthcare providers told me they hadn’t ever seen such severity of disease in South Asians.
As if that wasn’t hard enough, there was a stigma I dealt with culturally for needing medications and surgery to control my brand of disease, something many South Asians around me labeled as a “diet disease.” I felt like a failure not being able to control my Crohn’s with diet or alternative therapies, and my treatment with immunosuppressants, biologics and surgery was unnecessary delayed as a result.
It was all perplexing and a very lonely journey until I began advocating and met many other South Asians struggling with severe IBD. Some of them even have ostomies and perianal fistulizing Crohn’s disease like me. That’s when my experiences began to feel validated but at the same time, I began to wonder…how common really is IBD amongst South Asians? And were my delays to diagnosis and treatment, in addition to the severity of my disease, really all that rare?
A recent study published in Inflammatory Bowel Diseases—“South Asian Patients With Inflammatory Bowel Disease in the United States Demonstrate More Fistulizing and Perianal Crohn Phenotype”—stresses how much the number of South Asians being diagnosed with IBD has increased. In the U.S. alone, that number has grown 97% from 2000 to 2013. With that growth, researchers designed a study to analyze severity of IBD in South Asians vs. the white population living with IBD.
To read more, please visit the Crohn’s & Colitis Foundation’s IBDVisible Blog: https://www.crohnscolitisfoundation.org/blog/being-south-asian-american-living-with-ibd
~~ Studies on disparities in care in racial and ethnic communities within the IBD space are just beginning. Much more needs to be done and assessed. As such, I ask you all to share these groundbreaking studies and help me create awareness! Thank you as always! ~~
