SAGES Magazine

THE SOUTH AFRICAN GASTROENTEROLOGY REVIEW 2023 | VOLUME 21 | ISSUE 1 | 27 IBD AFRICA IBD Africa is a non-profit organisation founded in 2019 with a mandate to improve the care of people living in Southern and sub-Saharan Africa through Research, Education and Advocacy. Launched at SAGES in 2019 IBD Africa has grown into a dynamic and innovative organisation and is making a difference to the lives of people living with IBD. David Epstein is the founder and director of IBD Africa and he is supported by a board and members who represent gastroenterologists in private practice and academia, IBD surgeons, IBD dietitians, IBD nursing and IBD patients. Frankie Johnston assists with administration and our first formal volunteer, Hannah Edwards, assists with social media. One of our core strategies is to improve IBD patient health literacy and this is achieved through our quarterly online patient meetings. These meetings, streamed live to a Facebook page, bring local and international experts into the living rooms of patients to discuss all aspects of IBD care. Through audience participation and interaction these meetings often highlight gaps in IBD care. A prime example of this was a meeting in August 2022 entitled “Relationships, Sexuality and IBD”. Our panel of Simone Fourie and expert in IBD and sexuality fromOxford, Ros Boa, a sex therapist from Cape Town and Dr Neo Seabi an IBD Clinician from Charlotte Maxeke Academic Hospital revealed many of the deeply personal issues facing IBD patients seldom addressed by IBD clinicians. IBD Africa endeavours to feedback important messages, communicated by patients, to IBD clinicians in the country in order to foster “holistic care” for people living with IBD. Our meetings have attracted over 20,000 participants, 75% of whom are woman. IBD Africa is developing a strategy on reaching more men “suffering in silence” with IBD. IBD Africa Registry IBD Africa employed a new tech company, WAMTech Systems to take over our web-based registry and this has rejuvenated this project. WAMTech have an excellent track record in healthcare information systems with clients such as the Department of National Health, University of Cape Town and US Aid amongst others. The registry is well on its way to completion and updated data on IBD epidemiology will be presented in the near future. The kind support of Takeda, Ferring and Amgen for funding this project, is foundational to its success. IBD Africa Website IBD Africa launched its website in 2019 and an upgrade was needed to include more content relevant for people living with IBD in Africa and to streamline navigation. NB Media were employed with this task and we have launched a new site website at www.ibdafrica.org IBD Africa was also proud to announce that information on our website now includes languages other than English. Content in isiXhosa, isiZulu, seSotho is now available. In addition content in Swahili and Amharic caters for people living with IBD in East Africa. Equity Pharmaceuticals’ support has enabled the language translation project. IBD Africa Patient Videos Following the success of our IBD Africa patient videos in 2019, the first IBD videos of its kind produced in sub-Saharan Africa, through the support of Takeda and Ferring, IBD Cultural Perspectives” where two young women discuss living with IBD and “Life with a Stoma” have been completed. These are available for view. Three Years of Improving IBD Care Through Research, Education and Advocacy David Epstein Gastroenterologist and Director of IBD Africa, Vincent Pallotti Hospital, Pinelands, Cape Town Data from our Facebook Page Facebook Views 2022 = 21,100 Comments from our Meetings “Thank you all for sharing. I have never understood IBD like I do today. I salute you all” “Unfortunately my relationship with my family has completely broken down. While being supportive when I was in hospital, they could not understand why I wasn’t trying harder to get better. And still blame me for outbursts when I was on prednisone. The psychological toll is sometimes very high” “Thank you for your time. Myself as a patient appreciate your hard work” “Such a relevant topic, thank you!” Patient Advocacy Meeting Feedback Comments “I thought the workshop was great, it really opened my eyes to what patient advocacy is and the power we hold as patients” “It has really opened up my world…that I can take advocacy beyond self”