ADVOCACY – Page 2 – Own Your Crohn's

acceptance, advocacy, awareness, Body Positivity, Colorectal Surgery, Crohn's, Dating & Relationships, Gratitude, living with IBD, Ostomy, Ostomy Awareness Day, Self-image, stigma, Ulcerative Colitis

Ostomy Awareness Day: Empowering Ostomates to Live Fuller Lives

November 22, 2019

Last month, Amber Wallace Ogle of Ostomy Diaries & I got together with Hollister, Inc. (a major ostomy manufacturer) to bring our audiences a discussion on how to lead a fuller life with an ostomy. Our aim was to engage viewers from around the world who may be struggling with self-image, body image, family life and relationships with an ostomy. And it was a grand success! We reached nearly 1,500 viewers from over 46 countries and from the feedback received, it was a video that helped many. Here’s to many more conversations like this where we can help ostomates feel less like outcasts and more like the beautiful human beings…

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Tina Aswani Omprakash

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The Beauty of Ostomates Worldwide

October 17, 2019

Happy #OstomyOctober, everyone! After doing a piece about things we can do with an ostomy last year, it only seemed appropriate this year to highlight how diverse the population living with all types of ostomies is. Just to backtrack, many of you might be wondering what an ostomy is. According to the United Ostomy Associations of America (UOAA), “ostomy surgery is a life-saving procedure that allows bodily waste to pass through a surgically created stoma on the abdomen into a prosthetic known as a ‘pouch’ or ‘ostomy bag’ on the outside of the body.” There are generally three types of ostomies: (1) colostomy, (2) ileostomy and (3) urostomy. A colostomy takes a resected…

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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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My Nomination for the WEGO Health Patient Advocacy Awards

July 21, 2019

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…

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My Feature for Clinical Trial Awareness with Parexel

June 1, 2019

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:…

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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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The Top 10 IBD Blogs to Follow in 2019

March 15, 2019

Discussing bowel movements is undoubtedly a taboo subject for many people, which has helped a stigma form around Inflammatory Bowel Disease (IBD). For people living with IBD, most commonly in the form of Crohn’s Disease or Ulcerative Colitis, ‘embarrassment’, ‘shame’, and ‘isolation’ are regularly used words to describe the emotional strain that accompanies the physical symptoms of their condition. These bloggers, each excelling in particular areas, write openly and honestly about the realities of life with IBD. In doing so, they are helping create a community that offers support, raise awareness that helps tackle the stigma, and provide practical tips for various walks of life. Top IBD Blogs for Real…

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The Value of Awareness & Advocacy During the Holidays

December 21, 2018

The holiday season is a wonderful time to celebrate all the blessings in our lives. It is a time to reflect on a year that has passed and our resolutions for the upcoming new year. But it is also a time that can be difficult for many of us with chronic illnesses, such as inflammatory bowel disease (IBD). And this is where the importance of awareness and advocacy of our conditions come into the picture. As joyous of a time that the holidays are, many of us struggle to keep up with the shopping, the eating, the drinking, the travel and all the social merriment of the holiday season. Oftentimes,…

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6 Myths About IBD in Minority Patients, Busted

December 20, 2018

Here are the most common misconceptions surrounding Crohn’s and ulcerative colitis in minority populations. By Brianna Majsiak Inflammatory bowel diseases (IBDs) like Crohn’s and ulcerative colitis (UC) are not easy conditions to talk about. But an even rarer topic of conversation is how minority patients are affected by these chronic and debilitating diseases. Although IBD has predominantly affected whites in the past, a study published in August 2016 in the journal Inflammatory Bowel Disease found an increase in the rate of IBD in minority groups in the United States over the past two decades. “Patients may be reluctant to identify as having ulcerative colitis or Crohn’s disease, so our current numbers may really underrepresent these minority groups,”…

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Caregivers: The Greatest Blessing of All

December 7, 2018

As we wrap up Crohn’s & Colitis Awareness Week, I reflect on the greatest blessing of all in my IBD journey: my caregivers, my dear mother and husband. From the constant rides into the city for doctors’ visits to packing wounds and changing PICC line dressings while helping me walk and shower after surgery, Mom, you picked me up when I was at my lowest points in life. From driving me to Cleveland Clinic and flying me to Mayo Clinic for surgery while spending countless sleepless nights in the hospital, Anand, you stood by my side when society told you you could have done better. Many of our IBD journeys…

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