I’ve been active in my new role as a Color of Crohn’s & Chronic Illness (COCCI) ambassador for a couple of weeks now. This week has been especially busy.
In 2011, the U.S. Senate officially recognized Dec. 1-7 as Crohn’s and Colitis Awareness Week. The three goals of Senate Resolution 199 are to find a cure for Crohn’s and colitis, to raise awareness about inflammatory bowel disease (IBD), and to support research for improving IBD treatments and finding a cure. The week recognizes and supports IBD patients and appreciates the family members, caregivers, healthcare providers, and researchers who help them battle their disease.
As a COCCI ambassador, my mission during Crohn’s and Colitis Awareness Week has been to focus on being a person of color with IBD each day.
Dec. 1, 2: Am I the face of IBD?
During the first two days, I shared my perspective as a minority of a disease that affects mainly white people. Kaiser Permanente Northern California reported that the ethnic breakdown of its IBD patients was 66.5% Caucasian, 12% Hispanic, 8% Asian, 6.9% Black, and 6.7% multiracial, other races, or unknown ethnicity.
Most IBD studies have focused on Caucasians or don’t take ethnicity into account. A 2017 meta-analysis in the journal Clinical Gastroenterology and Hepatology discovered that the 525,425 IBD patients observed were 65% Caucasian, 30% Asian, 2% Hispanic, and 1% Black. Although the proportion of Caucasian participants is close to those covered by Kaiser, the breakdown of minority patients is disproportionate. This makes me wonder how effective treatments may be for minority patients, especially if genetics is involved.
Also, I’ve noticed that whether I’m waiting at the doctor’s office, sitting at the infusion clinic, or getting a colonoscopy, I’m often the only person of color. This is surprising, considering I live in racially diverse Austin, Texas, where only 48.3% of the population is white. As a Filipino American, I look more like the nurses and doctors than I do the other patients.
Dec. 3, 4: Is it IBD or my DNA?
Today and tomorrow, my tasks are to share how IBD has affected my life and discuss extraintestinal manifestations of IBD that I’ve experienced. Being Asian might factor into why the two are one and the same.
My anemia was a leading cause of why my gastroenterologist suspected I had Crohn’s. While prevalent among IBD patients, it’s more common in women of color. Despite iron infusions and supplements, my hemoglobin rarely rises into the normal range.
In my 30s, I showed signs of osteopenia, a precursor to osteoporosis. My doctor attributed my low bone mass to a vitamin D deficiency caused by Crohn’s and the long-term use of prednisone to control inflammation. However, bone loss is also in my genes. According to the National Osteoporosis Foundation, Asian American women are at the same risk for osteoporosis as white women, but are four times more likely to have it than Black women, and twice as likely as Hispanics. Furthermore, like 90% of Asian Americans, I’m lactose intolerant. Therefore, I don’t consume much calcium because I avoid dairy.
I often write about my battle with primary sclerosing cholangitis (PSC), an autoimmune liver disease associated with IBD. PSC has dictated several of my life choices, from my career to my decision to have children. Unlike anemia and osteopenia, my ethnicity doesn’t fit the profile of the typical PSC patient — white, middle-aged, and male. In fact, because I was a 20-something Filipina, my gastroenterologist presented my case at a conference shortly after he diagnosed me. Like with Crohn’s, the lack of research involving Asians with PSC leaves me with questions.
Dec. 5, 6, 7: How can I talk about IBD?
During the last few days of Crohn’s and Colitis Awareness Week, I’m supposed to concentrate on my role in spreading awareness. I never used to talk about my disease. I only decided to be more vocal about both Crohn’s and PSC when I feared the Affordable Care Act would be repealed at a time when my health was worsening. After my liver transplant, I became even more determined to tell my story.
By sharing my health journey in my column, I’ve learned more about my diseases and myself. While many IBD patients can relate to my experiences, I bring a fresh perspective as a Filipino American.
Although I was born in Alabama, and grew up very Americanized, my cultural background has shaped my approach as an IBD patient. Trendy anti-inflammatory foods, such as ginger, garlic, and onion, are staples of Filipino cuisine and have always been part of my diet. The Asian work ethic and fear of failure ingrained by my parents drive me to persevere through my illness.
Examining my IBD experience as a minority patient has been insightful. Compared to years past, my participation in Crohn’s and Colitis Awareness Week this year looks a lot different, because I look different.
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