How One Woman With Crohn's Disease is Destigmatizing IBD Within the South Asian Community
Tell me about your own history with Crohn's.
My father passed away when I was 8 from Crohn's that turned into colorectal cancer. That was hard because it launched my mom, sister, and me into poverty. At 22, I was diagnosed with ulcerative colitis, a misdiagnosis that turned out to be Crohn's. Since then, I've been through so much with inflammatory bowel disease [IBD]. In 2008, I had a massive flare-up, and within a six-month period I dropped to 85 pounds from 135 pounds and needed to have my colon removed. I've since had over 20 surgeries. Luckily I'm in remission now from a combination of surgeries and biologic drugs.
How has your culture influenced your journey?
In South Asian culture, there's a preference for alternative medicine. That caused delays in my care because my doctor didn't understand why I wouldn't go on more aggressive medications. There was this constant tug-of-war between me, my family, and my doctor. Not to mention that my boyfriend-now-husband's parents asked him to leave me. In my culture, a diagnosis like this affects marriageability.
What led to your advocacy work?
I started the Own Your Crohn's blog in March 2018. When I did, I got a barrage of messages from people experiencing the same cultural stigma. I realized Crohn's was rampant in my community. So I became a voice in the legislative advocacy space, speaking to Congress and senators. Now, I'm pursuing my master's in public health. I was the primary author on a study this year on unmet needs in the IBD patient population. And most recently, I, along with three other women, started a platform called IBDesis, and we approached a global network of clinicians of South Asian descent to form the South Asian IBD Alliance (SAIA). We are working to conduct research on IBD, spread cultural competency around the psychosocial barriers, and improve proactive care and shared decision-making to minimize disparities in care.
This article originally appeared in the December 2021 issue of Health Magazine. Click here to subscribe today!
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