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Talking openly with friends and colleagues, and sometimes even family, about the challenges of Crohn’s and Colitis can be tough. Two young British South Asian women with Crohn’s are on a mission to use their own personal experiences to help others of similar backgrounds around the world.
Sharan Khela and Surakhsha Soond, along with co-founders Tina in the USA and Madhura in India, have established a global online platform, IBDesis, that aims to support and empower South Asians living with Crohn’s or Colitis.
IBDesis – a combination of IBD and ‘desis’, a term used to describe the people, culture, and traditions of South Asian origin – was founded in January 2021. Since then, the platform has already grown to over 800 members in the Facebook community and 1,200 on Twitter, with more on Instagram, Twitter, and LinkedIn.
Participants are from geographically and culturally diverse parts of the world, including Europe, North America and Australia, as well as from Southern Asian countries such as India and Pakistan.
The two women have had long journeys with Crohn’s and so have plenty of wisdom to share. Surakhsha was diagnosed when she was 11. She has been in remission since she underwent a total proctocolectomy with permanent ileostomy at 19.
Sharan was diagnosed with Crohn’s in 2002 and finally started biologics after years of steroids. Unfortunately, intestinal damage led to stricture and perforation, resulting in a temporary ileostomy. This is now reversed, and Sharan is doing well on ustekinumab and looking forward to a healthy future.
When it comes to educational and career achievements, Sharan says family expectations are often high in the South Asian community, and a chronic illness adds to the pressure.
There has also been lots of positive feedback from IBDesis members.
All members are made aware that the platform doesn’t offer medical advice, says Sharan, but they are encouraged to share their own personal experiences and offer reassurance on topics such as managing pain and starting on biologic medication.
As well as providing an opportunity to share personal experiences, IBDesis has also created a series of useful resources for its membership, including tips sheets, Instagram Live events and videos. For World IBD Day this year, they created a video in 10 different languages, offering support to South Asians with Crohn’s and Colitis, including when it might be advisable to seek medical care.
The team have also approached a large global network of South Asian healthcare professionals specialising in Crohn’s and Colitis. They plan to work together to create resources, provide education and conduct research to move care forward. The resulting initiative, the South Asian IBD Alliance (SAIA), is the first international patient-clinician collaboration in the Crohn’s and Colitis community. It involves an extensive group of patients, gastroenterologists, colorectal surgeons, dietitians, psychologists and nurses based in the USA, UK, Canada, India and Pakistan.
Keep up with IBDesis
Follow the group on social media to keep up with the latest.