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 Aswani Omprakash in the USA and Madhura Balasubramaniam in India, have established a global online platform, IBDesis, that aims to support and empower South Asians living with Crohn’s or Colitis.
“We all met on Instagram last year and just thought, wow, other South Asians with Crohn’s and Colitis!” says Surakhsha. “I’ve noticed that some people in my own community don’t really talk about ill health or personal things, so being South Asian can add a different layer to the experience. As a team, we realised there was a huge opportunity to create a support network.”
“We share very similar experiences in that we all found it isolating to have this disease,” adds Sharan. “I never really saw anyone like me on the ward or in outpatient settings.
“We started a private Facebook group and noticed how many people were benefiting from us coming together and talking about such topics as sexual health and intimacy in relation to Crohn’s and Colitis. We felt that if we started the conversation, it would motivate others to share their journey. We’ve seen the difference already.”
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. In less than a year, the platform has already grown to nearly 800 members in the Facebook community and over 500 on Twitter, with more on Instagram, Twitter and LinkedIn (all the social media accounts can be found via the website at www.beacons.page/ibdesis). 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.
WISDOM ALONG THE WAY
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. She is now reversed, 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.
“I started to feel I wasn’t good enough as I felt I hadn’t hit all the milestones that other people have, like having a successful career, getting married and having children. It felt like a tug of war between the tradition I’d grown up with and the life that I was living because of this condition.”
Like many of our members, Sharan and Surakhsha have also witnessed a tendency to deny the reality of the illness among other people they’ve encountered. “Many people believe Crohn’s and Colitis are diet-related conditions and, if they change their diet, they’ll be fine. It’s also common to turn to alternative medicines and there’s a lot of misinformation around that. We felt that busting some of these myths and reducing the stigma around medication use could help people get the treatment they need.”
BUILDING COMMUNITIES
There has been positive feedback from IBDesis members, with one commenting: “Sometimes there are things I may want to get off my chest or bounce a thought off a group that understands the complexities of my culture. The support and information we receive from the admins and other members is incredible.”
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. “We try to be open about mental health as well,” she says. “And showing people that you’re perfectly able to live a full life with a stoma has been a big part of our message. Having these conversations in a public forum helps to normalise such discussions, inspiring members to speak up and advocate for their health.”
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. Look out for the alliance’s new website at www.southasianibd.org
TOWARDS GLOBAL HEALTH EQUALITY
“Connecting to people with Crohn’s and Colitis from around the world has highlighted the global inequalities in treatment,” says Sharan.
“I think every country faces different issues, but it’s difficult to hear that people living in South Asia are struggling to gain access to medication and one injection can cost them an entire month’s salary. We need to tackle these problems and the South Asian IBD Alliance can help with this. We’re so grateful for the NHS here – without it, I don’t know where I’d be today.”
“Our vision for the future is to see people with Crohn’s and Colitis from our community more represented in the media and other public spheres,” says Surakhsha. “We want South Asians to come forward. We also want to make people realise they’re not alone in this battle.”
