patient rights – Own Your Crohn's

Crohn's, Digital Healthcare Innovations, Disability Justice, invisible illness, Irritable Bowel Syndrome, J-Pouch, living with IBD, Ostomy, patient rights, Ulcerative Colitis

My Feature in The New York Times!

June 22, 2022

In conjunction with the Crohn’s & Colitis Foundation’s new We Can’t Wait App, nonprofit partner South Asian IBD Alliance’s Co-Founder & President Tina Aswani-Omprakash was interviewed and featured in the Metropolitan section of the Sunday’s edition of The New York Times on 19 June 2022!!! Read the article in-print below or online here: https://www.nytimes.com/2022/06/17/nyregion/public-bathrooms-nyc-tiktok.html Check out the We Can’t Wait App to find the restroom nearest to you in the U.S. Available now for download in Apple Store and Google Play: https://www.crohnscolitisfoundation.org/wecantwait

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Tina Aswani Omprakash

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IBD & Tea: What Patients Want to Know When It Comes to a Clinical Trial

January 12, 2021

Often, patients who live with Inflammatory Bowel Disease (IBD) do not respond to conventional drugs and are offered to participate in clinical trials for new treatments. When this happens, patients tend to have doubts and may feel scared because they do not have enough information about the process. This was the case for Tina Aswani Omprakash, IBD patient, patient thought leader, and award-winning author of the blog ´Own Your Crohn’s´, when she was offered to participate in a clinical trial. Aswani Omprakash talked about her experience from having participated in two clinical trials during the online debate ´IBD & Tea,´ streamed live on our Twitter account on the 25th of November. She was accompanied by IBD medical expert…

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Sophia’s Chronic Illness Journey: Forced Switching to Biosimilars in Canada

December 15, 2019

By Sophia Ali Khan From Diagnosis to Remission I was diagnosed with Crohn’s Disease at the tender age of seven in Calgary, Alberta in Canada. This was after I was born with congenital neutropenia, a condition that involves the deficiency of neutrophils, a type of white blood cell that plays a key role in fighting infection and inflammation. After many months of debilitating stomach pains and unexplained weight loss, I was rushed into the OR for an appendectomy, but upon examination, the doctors found Crohn’s Disease. Being of Pakistani origin, Crohn’s was unheard of so naturally my family and I had to navigate our way through a sea of diagnoses,…

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Tina Aswani Omprakash

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Summer of Activism: IBD Advocates You Should Follow on Social Media

August 7, 2019

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 best interests of patients at heart take their seat at the table. There are many activists in the IBD community that are doing this hard work and you can strengthen their achievements by amplifying their…

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Day on the Hill 2019: The Faces of IBD Legislation

May 11, 2019

Last year, I had the honor of attending my first Day on the Hill (DOH) organized by the Crohn’s & Colitis Foundation (http://ownyourcrohns.com/dayonthehill/). After such a rewarding and empowering experience, I’m thankful to have been invited back with 100+ other advocates to represent my fellow inflammatory bowel disease (IBD) warriors on the Hill again this year. LEGISLATIVE TRAINING This past week we kicked off DOH at the Capitol Hilton in Washington, D.C., with a panel on Patient Advocacy & Empowerment moderated by Advocacy Committee Chair of the National Council of College Leaders (NCCL), Bianca Hernandez. The panelists involved were Dr. Thomas Ullman, Chief of Gastroenterology at Montefiore Medical Center; Natalie…

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Real Talk About Fistulae

January 19, 2019

As I sit here today with a very heavy heart typing out this blog post, I’m not sure if the excruciatingly painful nodule I felt earlier this week is just another health scare or yet another horrifying abscess from a fistula. I hold back tears as I wonder what my next steps are and what I can do to keep spiraling anxiety in check. Now many of you might be wondering what I’m even referring to–abscess? Fistula? What the heck are those and why am I such a mess over them? Well, get ready for some real talk about the most harrowing experience I’ve faced as a Crohn’s patient. According…

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3 Patient Tips for Living & Thriving with Crohn’s or Colitis

December 10, 2018

On November 28th, 2018, in advance of Crohn’s & Colitis Awareness Week, Everyday Health interviewed patient advocates, Will Lanier (The Out Foundation), Tina Aswani Omprakash (Own Your Crohn’s) and Gaylyn Henderson (Gutless & Glamorous), on three tips to share with patients on how to live and thrive with IBD. View the video below to hear our tips! (Courtesy of Everyday Health, 11/28/18)

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Allowing Acceptance In

November 21, 2018

Thanksgiving season is upon us, dearests! As we prepare to celebrate life, love and laughter with our families and friends, it may be tough to avoid the elephant in the room: our chronic illnesses and disabilities. As hard as this may be, we can get through the holidays together by advocating for better quality of life and allowing acceptance of our conditions in! Our bodies may not be in perfect condition but let’s be thankful today and always for the moments of health, peace and joy that shine their way into our lives. ‘Tis the season to allow acceptance to pervade our lives to cultivate more love and better self-care!…

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Edgar Flores opens up about surviving near-death and the challenges of living with an ostomy in Mexico

November 4, 2018

Ayatka Wuikot Tlatuan is the Native American name given to Edgar Flores, a 48-year-old Mexico City native who was born into two tribes. His mother Aztec and father Apache Indian. Just over two years ago, Edgar developed appendicitis and underwent an emergency operation to remove his appendix. What happened next truly shocked him. “I thought the operation had gone smoothly, but within a few days I began to experience severe stomach pain and felt very weak,” he said. As the situation went from bad to worse, Edgar was rushed to the hospital where an ER surgeon discovered that his abdomen was filling with blood. He was hemorrhaging from the inside. Read…

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Real Talk about Ostomies

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On the eve of World Ostomy Day, I write this blog post in hopes of debunking many of the myths surrounding living with an ostomy. So here goes nothing… I always get super excited when friends and family muster up the courage to ask about my ostomy. It makes me feel so connected to them and like I’m being recognized for all of me and not just the healthy-looking parts of me. I feel their concern, their love and most of all, their interest in how I live my life, chronic illness and disabilities abound. See, the thing is, living with an ostomy is often the proverbial elephant in the…

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