By: Madhura Balasubramaniam, Sharan Khela & Tina Aswani-Omprakash Our patient advocate team, SAIA’s IBDesis, were honoured to participate in the American College of Gastroenterology’s (ACG) Annual Scientific Meeting in Philadelphia, PA, USA, between October 25th to October 30th, 2024. As patient advocates, we are grateful for the opportunity to learn about the latest advancements in the IBD and GI space more broadly. Here are some of our key takeaways from the conference! Understanding the Treatment Landscape (Madhura Balasubramaniam) Dr. Miguel Regueiro provided a comprehensive overview of the various therapies available today to treat IBD and their safety profile, as illustrated by the safety pyramid: It is very heartening for us…
- Colorectal Surgery, Crohn's, Digital Healthcare Innovations, health equity, Healthcare Disparities, living with IBD, Patient Voice, Ulcerative Colitis
- Crohn's, health equity, Healthcare Disparities, living with IBD, Ostomy, Patient Voice, Stigma, Ulcerative Colitis, Women's Health
SAIA is proud to announce Tina Aswani-Omprakash, MPH as our full-time CEO!
SAIA is honoured to announce that Tina Aswani-Omprakash, MPH, is now our full-time Chief Executive Officer 🎉🎉 Written by Madhura Balasubramaniam, Sharan Khela, Dr. Neilanjan Nandi & SAIA’s Board of Directors Tina is a patient advocate and thought leader par excellence, with several years of experience in spearheading international health advocacy efforts within and beyond the GI space. Tina’s work with Own Your Crohn’s has been groundbreaking for communities of colour, especially the South Asian community, where discussions around inflammatory bowel disease (IBD) have historically been clouded by cultural stigmas and misconceptions. Tina brought to light and underscored these hidden cultural considerations that shape healthcare for communities of colour across the world.…
- chronic illness, Colorectal Surgery, Crohn's, Cultural Stigma, living with IBD, Ostomy, Stigma, Ulcerative Colitis, World Ostomy Day
How Ostomy Surgery Impacted My Life
How ostomy surgery gave Tina Aswani-Omprakash her life back and the impact these surgeries can have in IBD treatment. Originally published on IBD Social Circle’s Blog It is estimated that approximately three-quarters of Crohn’s disease patients and a third of ulcerative colitis patients will need surgery at some point or another in their disease journey. What’s often not discussed enough, though, is how many of those surgeries will lead to ostomies. So, what is an ostomy and how does it help patients with inflammatory bowel disease (IBD)? According to United Ostomy Associations of America (UOAA), ostomy surgery is a lifesaving procedure. It allows bodily waste to pass into a medical…
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How to Enjoy Your Favorite Cultural Foods Living with Crohn’s Disease
Eating with Crohn’s disease can be a challenge as it is, and especially so during cultural events when there are food and festivities galore. I’ve struggled immensely with my diet as a South Asian American woman living with Crohn’s disease. Coming out of the hospital flare after flare, surgery after surgery, it was difficult to get care that would consider the cultural foods I was accustomed to eating… Read more on the Healthgrades website: healthgrades.com/right-care/crohns-disease/how-to-enjoy-your-favorite-cultural-foods-living-with-crohns-disease Originally Published on Healthgrades.com, Written by Tina Aswani-Omprakash, Medically Reviewed by Lisa Valente, MS, RD
- autoimmune disease, Crohn's, Diet, invisible illness, living with IBD, Mental Health, Minority Health, Nutrition, Ostomy, Ulcerative Colitis
Key Takeaways from Crohn’s & Colitis Congress 2023
The Crohn’s & Colitis Congress 2023 took place last month in Denver, Colorado, bringing together more than 1,300 healthcare professionals and researchers from across the globe to share the latest advancements in inflammatory bowel disease (IBD). To summarize some of my key takeaways: **Goal is to improve patient care by halting progression of disease** So, own your Crohn’s, own your ulcerative colitis, and stay abreast of the latest and greatest research in the IBD space to advocate for your own best care! To read more about Crohn’s & Colitis Congress 2023, please visit the full blog post on the Crohn’s & Colitis Foundation’s IBDVisible Blog. As a patient advocate myself, I…
- advocacy, affordable drug pricing, autoimmune disease, awareness, chronic illness, drug pricing, health insurance, pharmacy benefit manager
A Direct-to-Patient Model: How Online Pharmacy Marley Drug is Revolutionizing Drug Pricing
Sponsored by Medicure’s Marley Drug. All thoughts & opinions are my own. As patients, have you ever wondered if forgoing health insurance could perhaps save us money on prescription drugs? I honestly hadn’t considered it and this concept blew my mind when I first heard about it. For me, it always seemed like a no-brainer: go through my insurance policy to get access to prescription medications so I can contribute towards deductibles and meet my out-of-pocket costs many months later. But that can take forever and cost quite a lot of money…The reality is we might not have to do that and it might sometimes save us money to bypass insurance. I…
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My Feature in Gastroenterology & Endoscopy News!
Very honored to have been featured in Gastro & Endo News with regard to addressing sleep issues in IBD. This is something I’ve struggled with for a long time because I often need to use the facilities overnight and have trouble falling back asleep. Learn more about sleep issues and how to help us patients by visiting the article link here: https://www.gastroendonews.com/Article/PrintArticle?ArticleId=67175 As patients, sleep can really make a difference in our care and our overall ability to take each day as it comes. If our gastroenterologists aren’t able to address sleep concerns during our appointments, it may be best to bring up to our IBD nurses, NPs or PAs to…
- advocacy, autoimmune disease, COVID-19, Crohn's, immunocompromised, living with IBD, Ulcerative Colitis
Dropping Mask Mandates: A Time of Anxiety or Joy?
Last week I went back to school in-person for the first time in 2 years. There was a part of me that was excited, yes, but the other part of me was nervous as all heck. Meeting professors and students I had gotten to know virtually over the semesters felt like there was a human connection again outside of Zoom! And I have to admit that I really enjoyed going to class and being around like-minded people before this pandemic started. It was definitely a loss to go virtual but at the same time, going virtual meant people with disabilities like us could take care of our health while being…
- Coming Out, Crohn's, Dating & Relationships, diversity, LGBTQ+ health, living with IBD, Minority Health, Pride, stigma, Ulcerative Colitis, Women's Health
This Love Takes Guts
Our love isn’t simple, but it’s also the easiest feeling in the world. Being a woman in the LGBTQ+ community, I assumed that I would always have to come out over and over again throughout the course of my life. But when I was diagnosed with Crohn’s at 19 and had my first surgery at 20, I realized that I would have to come out about multiple parts of who I am for the rest of my life. It wasn’t until I found Girls with Guts in 2016 that I found a group of people that I finally didn’t have to go through the process of coming out to, at…
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Gaurav’s Covid-19 Journey as a Crohn’s Patient in India
Greetings! I’m Gaurav Sengupta, a 32-year-old IBD patient advocate from India. I currently live in Kolkata and run a plastic manufacturing business of my own. I was diagnosed with Crohn’s disease back in 2015 when I was working as a Corporate Banker in the UAE. I nearly ended up in surgery back then and once again in 2019 due to stricture formation and bowel obstructions. I have been fortunate that my GI has helped to successfully control my disease during both of those flares with the help of oral steroids and immunosuppressants. I recently fell prey to the global pandemic of Covid-19 during its second wave in India. Here, I…