Jasneel Deo shares his journey to Stockholm for the ECCO conference

EFCCA (European Federation of Crohn’s and Ulcerative Colitis Associations) was recently a part of the ECCO (European Crohn’s and Colitis Organisation) conference, where delegates including gastroenterologists, nurse specialists, researchers, and patient advocates were all invited to take part in one of the largest gastroenterology assemblies in the world, held annually.

The conference was held in Stockholm, Sweden and I was fortunate to be a part of this organisation that got to travel and meet my peers in person and see the world of IBD. I learnt so much through this experience that I hope to share with you all.

I had the honour of representing New Zealand as a patient advocate, meeting fellow advocates from various countries. Part of my role was sharing personal stories, ideas, and tools to help improve the quality of life for those diagnosed with IBD.

The conference spanned four days and included various programs and workshops tailored to different interests and specialties. I attended the EFCCA event and observed their efforts to raise awareness of the disease in Europe and globally, push for more research funding and investment, and gain governmental recognition to better support those affected by the disease.

One of EFCCA’s focuses at ECCO was the R.E.A.C.H. initiative (Rapid diagnosis and treatment, Equitable access to IBD care, Attain sustainable IBD care, Causes of IBD, and Holistic IBD care), with the motto, 'Let's REACH together.'

The presentations were informative, engaging, and inspiring. It was incredible to see people from around the world come together and agree on certain issues around healthcare and discuss strategies to better diagnose and treat people with IBD. They also acknowledged the impacts beyond the symptoms, such as impacts on day-to-day life, relationships, and ambitions.

The conference focused on crossing borders to share and discuss ideas and research for better understanding of IBD and improving care for those affected. One strategy and area of focus was digital ‘e-health’, where apps would be used and data would be collected to understand the conditions and patients’ experiences better. This included examining data collection techniques, what was being shared, does the patient give consent to share and enable their rights to privacy to be used to benefit the patient, and how long will the data be stored for until it is permanently deleted.

Many topics were discussed, and concerns were raised. Through patient feedback and pharmaceutical consultations, the goal is to enhance patient experiences and ensure healthcare is transparent and effective in delivering treatment.

The trip was only four days, with two days of travel from Auckland to Stockholm, and it was one of the most educational experiences I've had. Traveling with IBD was challenging, but planning my medication schedule and locating bathrooms made it manageable. I learnt so much, made many new friends, and became part of something that makes a difference in people's lives by sharing my story and experiences, exchanging ideas and methods, and sharing our love we have for each other and the world and the continuous growth towards a more equal and unified world.

I could not have done this adventure alone. Even though I travelled solo for 36 hours, I always had the support of my parents, the airlines, the flight attendants, and of course my friends at EFCCA who invited and included me in their celebrations and congress.

We live in an ever-increasing, collective, and diverse world and we are all better for it. I would like to personally thank my parents and family, extended family, and neighbours for their support and love throughout this journey. A special thanks to Crohn’s and Colitis New Zealand for supporting me and encouraging me to represent New Zealand as a patient advocate. I am especially grateful to Belinda Brown and Richard Stein for their guidance and constant support, which made me feel stronger and not alone. Thank you.

Lastly, thank you to EFCCA for including me in their wonderful organisation and reaching out to those living outside of Europe to be a part of this. I have enjoyed every minute of our work and activities together and look forward to continuing our work together. IBD is truly a global disease that can affect anyone, anywhere and it was encouraging to be a part of an organisation that recognises that the only way we’re going to solve this is together.

Going forward I would love to continue my work and relationships with my friends overseas to raise more awareness of IBD and better engage society and our communities to support those affected with IBD. I also hope to grow the youth group, so the next generation can continue this vital work and serve as a liaison between New Zealand and other countries to share ideas and support each other.