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…
- awareness, coping with flares, Crohn's, living with IBD, Mental Health, stigma, Ulcerative Colitis, World IBD Day
~OYC Trailblazers~ Harman’s Story from India
By Harman Singh Randhawa My battle with ulcerative colitis began in 2003. I was 20 years old and in my 2nd year of studying Engineering. By the time the diagnosis came through, I had already lived with pain and inordinate trips to bathroom for more than 6 months. Ignoring my painful symptoms and the discomfort that came with it, I kept delaying getting a thorough checkup. I started experiencing bloody diarrhea for many days. Finally, it was my sister who decided that the situation had gotten out of hand and drove me to PGI Hospital in Chandigarh in Punjab, India. I underwent a few tests and when the blood test…
- 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…
- acceptance, awareness, Colorectal Surgery, coping with flares, Crohn's, living with IBD, Mental Health, PTSD, Stigma, Ulcerative Colitis, Women's Health
World PTSD Day 2019: The Faceless Woman
In honor of World PTSD Day today, I release a poem I wrote some weeks ago surrounding the medical trauma I’ve faced as a Crohn’s patient. This poem is not for the faint of heart so I will not be offended if you cannot read it. Post-traumatic stress is a term that’s often thrown around lightly but it has serious implications for people who have been in battle for their country, for their lives and against chronic illnesses. Everyday is a minefield with an array of flashbacks and memories that keep us from living our best lives. I urge you all to learn more and to respond to those who…
- 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…
- acceptance, awareness, Body Positivity, Colorectal Surgery, Crohn's, Fistulizing Disease, living with IBD, Mental Health, Ostomy, Self-image, Ulcerative Colitis, Women's Health, World IBD Day
Why My IBD Scars Make Me Proud
How I learned to love what once made me shudder. By Tina Aswani Omprakash Originally published by Everyday Health on 5/17/2019: https://www.everydayhealth.com/columns/my-health-story/why-my-ibd-scars-make-me-proud/ This year’s World IBD Day theme is “Making the Invisible Visible,” and I’ve been taking a long hard look at what that means to me. The reality is that living with inflammatory bowel disease (IBD) has meant donning an invisibility cloak for most of my adult life. But over the past 14 months, I’ve striven to make my invisible illness visible. From sharing my story widely on social media to using my platform to educate others on how IBD wreaks havoc on patients like me, I’ve come to realize that visibility is necessary for…
- 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…
