Summer of Activism: IBD Advocates You Should Follow on Social Media
Originally published by Amber Tresca on August 6th, 2019: http://aboutibd.com/2019/08/06/summer-of-activism-ibd-advocates-you-should-follow-on-social-media/Improving the quality of life for people with inflammatory bowel disease (IBD) takes commitment and focus to understanding the issues affecting patients and caregivers. Real change means engaging with all stakeholders, including physicians, industry, and government, as well as patients and caregivers. A future that includes more effective treatments and compassionate care for those touched by IBD will only happen when those who have the...
Clinical Trials: The Next Frontier for Diverse Populations of IBD Patients
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,...
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). ✊? Why I advocate! We all deserve representation for our...
~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...
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 Day). And I continued...
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 suffer...
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...
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. To learn what a...
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 what you do in a photo....
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...
~OYC Trailblazers~ Jennylyn’s Ostomy Love Story in the Philippines
My name is Jennylyn Ajes and I’m 32 years old from Laguna, Phillippines. In 2018, I was diagnosed with stage 2b cervical cancer, which means I had a tumor that had grown beyond the cervix and uterus.[1] During this time, I had undergone chemotherapy, radiation therapy...
Managing Ostomy Care in the Era of Covid-19
Many of us with chronic illnesses have struggled throughout this pandemic with accessing timely care. One issue I’ve faced is because of my gastroparesis and other functional gastrointestinal conditions (IBS, SIBO etc.) acting up, my weight has been fluctuating a lot...
IFFGD #DDHChat: Nutrition for the Ileostomy – The Dietitian & Patient Perspectives
The Diet & Digestive Health (#DDHChat) Twitter chat series with the International Foundation for Gastrointestinal Disorders (IFFGD), co-host Tina Aswani Omprakash and lead host dietitian Neha D. Shah, MPH, RD, CNSC, CHES. We are excited to help to educate...
~ 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....
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...
