According to U.S. Census expert and demographer, William H. Frey, approximately half the U.S. population will be non-Caucasian come 2045.[i] Of the total U.S. population, less than ten percent participate in clinical trials. And the number of racial and ethnic minorities partaking is an even smaller number, approximately five to fifteen percent of those who participate in clinical trials.[ii] As a woman of color living with Crohn’s Disease, I advocate for various marginalized communities (racial and ethnic minorities, LGBTQ+, etc.) suffering from chronic illnesses and disabilities. To me, the above data on clinical trials isn’t just an important set of numbers. These statistics are crucial for our future and become…
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My Nomination for the WEGO Health Patient Advocacy Awards
In the last few weeks, I was nominated for 6 different WEGO Health Awards in honor of my advocacy work for patients who suffer from inflammatory bowel disease (IBD): Patient Leader Hero, Best Advocacy for Another, Best in Show: Blog, Best in Show: Facebook, Best in Show: Twitter and Rookie of the Year. Now many of you might be wondering why I advocate. I advocate because we all deserve representation no matter the color of our skin, shape or size of our bodies, our gender, our sexual orientation or our ability (or lack thereof). ✊? We all deserve representation for our illnesses and disabilities. And our conditions and the way we…
- Ableism, acceptance, advocacy, awareness, caregivers, Colorectal Surgery, Crohn's, Dating & Relationships, Disability Justice, Fistulizing Disease, living with IBD, Ostomy, stigma, Ulcerative Colitis, Women's Health
Love Knows No Disability
Nine years ago today, the love of my life, Anand, and I were married in a beautiful Hindu temple with several of our relatives and friends in attendance from all over the world. It was a momentous occasion for me not just in a traditional sense but because of how close I had been to death just two years prior. But as beautiful as the wedding was, the process of getting married wasn’t exactly a fairytale or a bed of roses. You see, a couple years prior, I was freed of an extremely warped and diseased colon on the 4th of July, 2008 (see blog post: My Very Own Independence…
- advocacy, awareness, Clinical Trials, Colorectal Surgery, coping with flares, Crohn's, Disease Prevention, Emerging Therapies, living with IBD, stigma, Ulcerative Colitis
In the Name of Science & Research
Traveling home from Mayo was beyond excruciating– horrible abdominal cramping and nausea/vomiting as I could barely walk. After all the testing I had had (4 testing procedures, an ER visit, multiple appts all in 5 days) and my Stelara trough levels coming back as borderline, it was no surprise that my Crohn’s Disease had flared. I was in a frenzy and knew I had to act fast. Within an hour of landing, my local GI and I came up with a plan to admit me at my local hospital. She asked me to consider enrolling in the POWER clinical research study in which she would reinduce me with a megadose…
- advocacy, awareness, Colorectal Surgery, Crohn's, Fistulizing Disease, J-Pouch, living with IBD, Ostomy, Ulcerative Colitis, Women's Health
J-Pouch Failure – Tina’s Story
Originally published by Amber of Colitis Ninja on June 12, 2019: https://colitisninja.com/2019/06/j-pouch-failure-tinas-story/ J-POUCH TAKEDOWN ANNIVERSARY Next month is my 5 year takedown anniversary for my j-pouch. I have stated many times that the j-pouch has a 94-96% success rate. But you don’t hear many success stories on the internet because most of them are out there living their lives and not boasting about it on the internet. Because you don’t hear a majority of the success stories out there, I feel compelled to keep sharing my own story of life with a j-pouch. SUCCESS & FAILURE STORIES I have given a lot of thought to how I would address this year’s takedown anniversary. I thought…
- acceptance, advocacy, awareness, coping with flares, Crohn's, living with IBD, Mental Health, stigma, Ulcerative Colitis, Women's Health
I’m Chronically Ill & Depressed; So What?
You might be looking at this photo and thinking, “Oh, Tina looks like she’s having a great time enjoying beautiful weather in the park.” Can you tell an hour before this photo was taken, hubs struggled to get me to leave our home? Can you tell I had been curled up in bed crying? Can you tell it was next to impossible for me to get myself ready and out of bed that afternoon? NOPE. The truth is photos on social media and the Internet, in general, can be so deceiving. What you see here is a woman with Crohn’s and 37520572 other ailments smiling in a park because that’s…
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My Feature for Clinical Trial Awareness with Parexel
Honored to represent the clinical trial community within the Crohn’s Disease space for Parexel! Clinical trials are an important way for new medications to be tested and approved for use to provide quality of life, hope and happiness to those who suffer from chronic illnesses. Please take a moment to read my clinical trial story below and share: For every share of my clinical trial story, Parexel will donate funds to raise awareness for the importance of clinical research! #parexelwithheart So, own your Crohn’s, own your chronic illness, and spread love, light and hope to your community by considering clinical trials in your care. Originally published via Parexel on 5/28/2019:…
- advocacy, awareness, caregivers, Crohn's, living with IBD, Mental Health, Minority Health, Ulcerative Colitis
Happy World IBD Day from Digestive Disease Week (DDW)!
Last weekend, a number of us celebrated World IBD Day from DDW in San Diego, CA. We advocates sat in sessions and conferences brainstorming the best ways in which to address the gaps in IBD care and bring those ideas forward to doctors leading the quest to improve our care. We discussed so many topics from mental health to support and caregiving in addition to sexual health and intimacy. We talked to Drs. Aline Charabaty & Neilanjan Nandi about how to take those topics forward to the larger community and have the tough conversations with our own providers. All in all, we, as a team, collaborated to bring together a…
- advocacy, awareness, Colorectal Surgery, Crohn's, Emerging Therapies, Fistulizing Disease, living with IBD, Ostomy, Ulcerative Colitis, Women's Health
Fistulas: What You Need to Know About a Common Side Effect of Crohn’s
By Padma Nagappan Medically Reviewed by Kareem Sassi, MD Originally published by Everyday Health on May 14th, 2019: https://www.everydayhealth.com/crohns-disease/symptoms/fistulas-common-crohns-side-effect-you-should-aware/ Fistulas are an abnormal connection between two body parts. In Crohn’s patients they form as tunnels within the walls of the intestine and connect to other organs or tissue, causing pain and infection. After years of living in intense pain and going through several misdiagnoses, Tina Aswani Omprakash, found out she had Crohn’s disease. Her condition was so severe that she needed emergency proctocolectomy surgery (removal of the colon and rectum), and she was put on biologics. “I knew Crohn’s was an intense disease, but I did not realize what it takes to really, truly fight…
- acceptance, advocacy, awareness, Crohn's, living with IBD, Mental Health, Minority Health, stigma, Ulcerative Colitis, Women's Health
As a Chronically-Ill Brown Woman, Here’s Why I Share My Survival Story
I had the honor of attending the 2019 HealtheVoices conference in Dallas, TX, as a patient advocate who was selected to attend from a group of 400+ applicants. Here are my impressions of the conference theme for this year, “A Little Heart Can Do Big Things” from the perspective of a chronically-ill brown patient advocate: https://www.oshihealth.com/my-survival-story/. Originally published by Oshi Health, Inc., on April 29th, 2019. Written by Tina Aswani Omprakash Please feel free to leave comments and feedback. I would love to hear your thoughts as always.
