Discover and read the best of Twitter Threads about #SouthAsianIBD

Most recents (7)

Tina ✨ Own Your Crohn’s

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 1/ I'm Tina from 🇺🇸 co-founder of Team @ibdesis. We are proud to lead #PatientExperience on @MondayNightIBD to discuss specific aspects of #SouthAsianIBD experience. We hope to improve care & reduce disparities in our community around the 🌍 thru @southasianIBD. #MondayNightIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 2/ Even though my dad suffered from #Crohns, when I presented with #IBS #constipation, #GERD, joint pains & eye issues as a child, no one made the connection or escalated it to a gastroenterologist. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 3/ When my dad passed from #CRC, my family went into poverty & couldn't afford health insurance. Though I was symptomatic as a child, I didn't have a #colonoscopy until 22 when I got my 1st job. That's when I received my very delayed #IBD diagnosis. #MondayNightIBD #SouthAsianIBD

Rameshwar Chaudhary

@LivingWithUmeed

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @vkckiranpullela @TheMaveilousGut @dunung_ruchita Although I had the support of some friends & family, the taboo & lack of knowledge about #IBD meant not many knew how to support me. I found it difficult to educate loved ones & am thankful for more resources that are available now. #MondayNightIBD #SouthAsianIBD (1/ )

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @vkckiranpullela @TheMaveilousGut @dunung_ruchita At the same time, I've also met people who couldn't understand how someone my age (17-23) could have such a #disability. The invisibility of #IBD added to this. As a result, my struggles with #IBD were downplayed, minimized & ignored. #MondayNightIBD #SouthAsianIBD (2/ )

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @vkckiranpullela @TheMaveilousGut @dunung_ruchita Given the stigma around #digestive dx & #disability in #SouthAsian community, I felt like I had to make my condition as invisible as possible. These internalized social norms meant I also downplayed my UC to make others more comfortable. #MondayNightIBD #SouthAsianIBD (3/)

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 1/ When I transitioned to adult care at 17, I felt like I was stuck in a constant loop of tapering off prednisolone, flaring, and then ending up in hospital on IV steroids only to end up on another course of steroids for my #IBD.
#MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 2/ After speaking w/ a friend who knew someone w #Crohns, I decided to try #CAM. I didn't know what else to do. The promise of a "cure" & feeling defeated by the constant steroid cycle I was prescribed drove me to seek out another option. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 3/ Family had planned an 🇮🇳 trip. The journey to an ayurvedic clinic took hrs & we waited ~6 hours only to spend 5-10 mins w/ the #ayurveda specialist. Nothing was asked about my history w/ #Crohns; I was sent away w/ tablets wrapped in newspaper. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 1/ I'm Sharan from 🇬🇧, co-founder Team @ibdesis. We are proud to lead #PatientExperience on @mondaynightibd to discuss specific aspects of #SouthAsianIBD experience. We hope to improve care for our community around the 🌍. #MondayNightIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 2/ My initial diagnosis came after months of going back & forth w my GP who was reluctant to refer to a specialist because they were certain that my symptoms couldn't be due to #IBD. In their own words, "#SouthAsians don't get IBD" #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 3/ This delay led to extreme weight loss and worsening of symptoms to the point where I was unable to get myself out of bed. I was admitted into hospital with my weight down to 28kgs, from 38kgs just months before.
#MondayNightIBD #SouthAsianIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 📣 #IBD patients & caregivers:

#IBDPoll 1️⃣

📊Thinking abt your IBD needs, what's been the biggest hurdle to your care?
📝 In the replies, elaborate. What’s helped your care?

Please share your #PatientExperience w #MondayNightIBD 👇🏽

👨‍👩‍👧‍👦=Family
👩🏼‍🤝‍👩🏽=Friends
🥼=Specialist

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita #MondayNightIBD #PatientExperience
#IBDPoll 2️⃣

🧐Thinking about your culture’s expectations

📊 Have you tried Complementary and Alternative (CAM) Therapies (ex: ayurveda, homeopathy)?

What drove you to try these therapies? Please share your experience.

SE=side effects

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita Thank you @MondayNightIBD for shining a spotlight on 🌏 #SouthAsianIBD pt experience!

I'm Madhura from 🇮🇳, co-founder Team @ibdesis. We are proud to lead #PatientExperience on #MondayNightIBD!

We hope to improve care for our community around the 🌍 through @SouthAsianIBD.

Neilanjan Nandi, MD, FACP

@DrAnjaliPandit @DCharabaty @nehagastrord @ibdseb @IBDimmunology @P_DeepakIBDMD @drvishal82 @MondayNightIBD @southasianIBD @ibdesis @ownyourcrohns @crohnsbabble @rebelliousgut @drsumitbhatia @deepakjgastro @shivaramsingh @drroshanag @stevenbollipo @drkeithsiau @doctorboletoh @Rajatgastro @KailashKolhe @DrAnuraagJ @realTBpeople @anupam_gastro @UjjwalSonika @DrAshokGastro @vandana_midha @ashok_doctor @drakashmathur @Khanna_S @miNitinjagtap @jalpa_devi @DharJahnvi @SamirGadepalli @DrSamirAShah1 @SunandaKaneMD @UmaMahadevanIBD @BilalMohammadMD @AsadurRahman87 @ShimaghavimiMD @ibdmd_kaur @pakotze @philtozer1 @gvraoaig @MadhoorRamdeen @EmmaIBDhull @DrTiffTaft A12/1
Thanks @DrAnjaliPandit & Namaste @MondayNightIBD !

Indeed,the Chronic Illness experience itself AND the Cultural Stigma prevalent in #SouthAsianIBD impact the acceptance of the illness by BOTH patient & family

This DEMANDS more Culturally Competent approaches & Advocacy!

@DrAnjaliPandit @DCharabaty @nehagastrord @ibdseb @IBDimmunology @P_DeepakIBDMD @drvishal82 @MondayNightIBD @southasianIBD @ibdesis @ownyourcrohns @crohnsbabble @rebelliousgut @drsumitbhatia @deepakjgastro @shivaramsingh @drroshanag @stevenbollipo @drkeithsiau @doctorboletoh @Rajatgastro @KailashKolhe @DrAnuraagJ @realTBpeople @anupam_gastro @UjjwalSonika @DrAshokGastro @vandana_midha @ashok_doctor @drakashmathur @Khanna_S @miNitinjagtap @jalpa_devi @DharJahnvi @SamirGadepalli @DrSamirAShah1 @SunandaKaneMD @UmaMahadevanIBD @BilalMohammadMD @AsadurRahman87 @ShimaghavimiMD @ibdmd_kaur @pakotze @philtozer1 @gvraoaig @MadhoorRamdeen @EmmaIBDhull @DrTiffTaft A12/2

There is a paucity of data to glean cultural insights & disease awareness on #SouthAsianIBD

❗️That is an issue in and of itself ❗️

👌🏾Fortunately, there is some literature to highlight the needs of the South Asian population.

#MondayNightIBD @southasianIBD

@DrAnjaliPandit @DCharabaty @nehagastrord @ibdseb @IBDimmunology @P_DeepakIBDMD @drvishal82 @MondayNightIBD @southasianIBD @ibdesis @ownyourcrohns @crohnsbabble @rebelliousgut @drsumitbhatia @deepakjgastro @shivaramsingh @drroshanag @stevenbollipo @drkeithsiau @doctorboletoh @Rajatgastro @KailashKolhe @DrAnuraagJ @realTBpeople @anupam_gastro @UjjwalSonika @DrAshokGastro @vandana_midha @ashok_doctor @drakashmathur @Khanna_S @miNitinjagtap @jalpa_devi @DharJahnvi @SamirGadepalli @DrSamirAShah1 @SunandaKaneMD @UmaMahadevanIBD @BilalMohammadMD @AsadurRahman87 @ShimaghavimiMD @ibdmd_kaur @pakotze @philtozer1 @gvraoaig @MadhoorRamdeen @EmmaIBDhull A12/3

🔎An interview cohort of UK #SouthAsianIBD patients revealed the myriad factors that shape the Patient Experience & Cultural Stigma of IBD

Kudos to the Patients & @Suzannemukherj1, Bryony Beresford, Karl Atkin & @ibdseb for these insights!

#MondayNightIBD @southasianibd

Neha D. Shah MPH, RD, CNSC, CHES

@ibdseb @IBDimmunology @DCharabaty @P_DeepakIBDMD @drvishal82 @MondayNightIBD @southasianIBD @ibdesis @ownyourcrohns @FITWITMD @crohnsbabble @rebelliousgut @drsumitbhatia @DrAnjaliPandit @deepakjgastro @shivaramsingh @drroshanag @stevenbollipo @drkeithsiau @doctorboletoh @Rajatgastro @KailashKolhe @DrAnuraagJ @realTBpeople @anupam_gastro @UjjwalSonika @DrAshokGastro @vandana_midha @ashok_doctor @drakashmathur @Khanna_S @miNitinjagtap @jalpa_devi @DharJahnvi @SamirGadepalli @DrSamirAShah1 @SunandaKaneMD @UmaMahadevanIBD @BilalMohammadMD @AsadurRahman87 @ShimaghavimiMD @ibdmd_kaur @pakotze @philtozer1 @gvraoaig @MadhoorRamdeen @EmmaIBDhull @alisontalbot72 A10/1: Many #southasians are plant-based d/t ethic & religious beliefs. Westernization of diet w/⬇️fiber (e.g., ⬇️fruits & vegetables) is a possible risk factor to IBD. As development of IBD is complex, diet alone, however is not the sole risk factor of IBD.
#MondayNightIBD

@ibdseb @IBDimmunology @DCharabaty @P_DeepakIBDMD @drvishal82 @MondayNightIBD @southasianIBD @ibdesis @ownyourcrohns @FITWITMD @crohnsbabble @rebelliousgut @drsumitbhatia @DrAnjaliPandit @deepakjgastro @shivaramsingh @drroshanag @stevenbollipo @drkeithsiau @doctorboletoh @Rajatgastro @KailashKolhe @DrAnuraagJ @realTBpeople @anupam_gastro @UjjwalSonika @DrAshokGastro @vandana_midha @ashok_doctor @drakashmathur @Khanna_S @miNitinjagtap @jalpa_devi @DharJahnvi @SamirGadepalli @DrSamirAShah1 @SunandaKaneMD @UmaMahadevanIBD @BilalMohammadMD @AsadurRahman87 @ShimaghavimiMD @ibdmd_kaur @pakotze @philtozer1 @gvraoaig @MadhoorRamdeen @EmmaIBDhull @alisontalbot72 A10/2: There are limited #southasian diet studies in IBD & for #perianalCD. What we know from a few #southasianibd studies, #southasians w/IBD shown to have food avoidance patterns d/t beliefs that diet may initiate IBD or its relapse. #MondayNightIBD

@ibdseb @IBDimmunology @DCharabaty @P_DeepakIBDMD @drvishal82 @MondayNightIBD @southasianIBD @ibdesis @ownyourcrohns @FITWITMD @crohnsbabble @rebelliousgut @drsumitbhatia @DrAnjaliPandit @deepakjgastro @shivaramsingh @drroshanag @stevenbollipo @drkeithsiau @doctorboletoh @Rajatgastro @KailashKolhe @DrAnuraagJ @realTBpeople @anupam_gastro @UjjwalSonika @DrAshokGastro @vandana_midha @ashok_doctor @drakashmathur @Khanna_S @miNitinjagtap @jalpa_devi @DharJahnvi @SamirGadepalli @DrSamirAShah1 @SunandaKaneMD @UmaMahadevanIBD @BilalMohammadMD @AsadurRahman87 @ShimaghavimiMD @ibdmd_kaur @pakotze @philtozer1 @gvraoaig @MadhoorRamdeen @EmmaIBDhull @alisontalbot72 A10/3: Malnutrition can arise in 65-75% in CD. Data of its prevalence not fully known in #southasianibd. Screening for malnutrition should take place at the initial visit & should be ongoing. #MondayNightIBD