My name is Madhura Balasubramaniam and I live in India. I have been locked in battle with my intestines for as long as I can remember. I spent a large part of my early childhood dealing with constant spells of stomach pain, diarrhea, vomiting and rashes. I struggled to meet my height and weight targets and had multiple nutritional deficiencies. When I was 10 years old, I was given a tentative diagnosis of celiac disease and I have been gluten-free since. While this diet seemed to provide pain relief, I remained underweight and anaemic. In mid-2018, I began to experience occasional bouts of watery diarrhea and fatigue. I was travelling…
- Crohn's, Cultural Stigma, extraintestinal manifestations, feeding tube, Healthcare Disparities, living with IBD, Minority Health, Nutrition, Stigma, Women's Health, World IBD Day
- awareness, Crohn's, Fistulizing Disease, Healthcare Disparities, Minority Health, Ostomy, stigma, Ulcerative Colitis
Being South Asian American & Living with IBD
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…
- Crohn's, Healthcare Disparities, living with IBD, Mental Health, Minority Health, Ulcerative Colitis
Patients’ Journey Through Inflammatory Bowel Disease (IBD): A Qualitative Study
Tina Aswani Omprakash, Norelle Reilly, Jan Bhagwakar, Jeanette Carrell, Kristina Woodburn, Abby Breyer, Frances Close, Gabriel Wong, PATIENTS’ JOURNEY THROUGH INFLAMMATORY BOWEL DISEASE (IBD): A QUALITATIVE STUDY, Inflammatory Bowel Diseases, Volume 27, Issue Supplement_1, January 2021, Pages S53–S54, https://doi.org/10.1093/ibd/izaa347.127 **Abstract originally published in the Crohn’s & Colitis Foundation’s journal Inflammatory Bowel Diseases on January 21st, 2021 and presented at Crohn’s & Colitis Congress. Research study sponsored by Genentech & led by patient advocate Tina Aswani Omprakash of Icahn School of Medicine at Mount Sinai** I’m proud to announce the first patient advocate led study in the IBD space! Please view the above downloadable poster and link to the abstract for the results…
- acceptance, advocacy, Black Lives Matter, Caregiving, coping with flares, Crohn's, health equity, Healthcare Disparities, living with IBD, Minority Health, Ulcerative Colitis
~ OYC Trailblazers ~ Amy & Terrell: Crohn-ically Ever After
My name is Amy Btiebet Washington, I’m 34 years old and live in Ohio. I was diagnosed with Crohn’s disease when I was 26 (in 2012). Initially, I thought I had a terrible flu, but after a few days of symptoms, I was rushed to the hospital with a 106-degree fever. I was immediately treated for sepsis, which led to 5 days in the ICU. After multiple tests, I was diagnosed with Crohn’s disease. The sepsis was a result of a severe infection caused by Crohn’s disease. At the time of my diagnosis, I knew very little about the disease and didn’t know anyone who lived with Crohn’s or ulcerative…
- advocacy, Crohn's, diversity, Gastroparesis, health equity, Healthcare Disparities, Healthcare Marketing, living with IBD, Patient Voice, Ulcerative Colitis, Women's Health
MM&M Transform Talks: Prioritizing the Patient Voice
I recently had the opportunity to work with the MM&M Transform conference on a panel discussion on Prioritizing the Patient Voice in anticipation of their conference on September 29th-30th. A panel of 3 of us patient advocates (Tonya Cherie Hegamin, Type 1 Diabetes; Teresa Johnson, Multiple Sclerosis & Heart Disease; and me, Crohn’s Disease & Gastroparesis) discussed why it’s so important to engage patients in healthcare discussions, from digital health to biotechnology and pharmaceuticals. At the forefront of our conversation was a topic near and dear to all 3 of us: diversity, inclusion and health equity as well as medical accessibility for patients of color like ourselves. Check out our…
- advocacy, awareness, Black Lives Matter, coping with flares, Crohn's, Disability Justice, Healthcare Disparities, Minority Health, Ostomy, Ulcerative Colitis
Black Lives Matter in the IBD Community, Too
In recent weeks, months and years, we have witnessed far too many hate crimes toward our Black brothers and sisters. It is not unknown to us that many Black bodies have been tested upon without fair pain medications, expected to endure tremendous suffering in the name of science. Within the healthcare system, not only do Black folx face significant health disparities and delays to diagnosis, they also deal with uphill battles when it comes to accessing good insurance, care and treatment options. With this blog post, I aim to shed light on the stories of 8 lovely Black inflammatory bowel disease (IBD) patients while sharing the resources of 3 die-hard…
- acceptance, advocacy, awareness, Crohn's, Dating & Relationships, Disability Justice, Healthcare Disparities, LGBTQ+ health, living with IBD, Minority Health, Ostomy, stigma, Ulcerative Colitis
~OYC Trailblazers~ Michelle’s Story on the Intersection of Crohn’s & an LGBTQIA+ Identity
By Michelle Cabral My symptoms first started around the age of 11. As I grew into my teenage and adult years, my symptoms worsened. I found myself dealing with bathroom urgency and vomiting on a daily life. I distinctly remember when I was about the age of 16, my mother and I were leaving a restaurant after a night out and I had already vomited. I still remember her saying something to the effect of “one day you’ll be able to go out for dinner and not feel like this.” Little did she know that my life would continue with this trajectory and I would finally be diagnosed via colonoscopy…
- acceptance, advocacy, awareness, Black Lives Matter, Disability Justice, Healthcare Disparities, Minority Health
Step in Our Shoes: A Discussion on Being an Ally to the Black Community
Earlier this month, I moderated a live discussion for Savvy Co-op on all things around the racism, injustice, inequality that Black Americans face. The advocates involved included Tonya Hegamin (Author, Professor, Type 1 Diabetes/LGBTQIA+ advocate), Erron Maxey (international basketball player, ESL teacher, Crohn’s Disease advocate) & Larry Turner (former Lakers basketball player, coach & international basketball player). They each brought very unique perspectives and shared experiences that taught us all how to be more mindful of the discrimination that Black Americans face on a regular basis. To learn more on how to become an ally to the Black community and start having brave conversations that incite, check out our discussion…