OA35 Supporting young people and families impacted by lupus

Abstract

Background/Aims Young people with lupus often experience significant emotional and social challenges, leading to feelings of isolation and overwhelm. There is an unmet need to provide support specifically to young people and their families impacted by lupus. The importance of community and support is critical for their wellbeing, and targeted initiatives can help address these gaps. With the creation of Lupus UK Youth, it aims to empower young individuals affected by lupus and their families by fostering community connections through events, raising awareness for the reality of living with lupus, and providing tailored resources and support. Methods Lupus UK Youth focuses on several key areas which should help support the above aims. Firstly, community building will be generated through establishing a network of young people sharing experiences both on social media and in closed spaces, such as a WhatsApp group chat. Secondly, campaigns will be implemented to highlight the realities of living with lupus as a young person, using testimonials and educational content created by the lupus youth community to make them feel heard and seen. Thirdly, both in-person and virtual events will be hosted to allow for young people and their families (separately and together) to connect and learn from each other in a safe environment. Lastly, resources specifically designed for young people and families will be created and distributed to enhance the understanding of lupus and available support Lupus UK Youth can provide. Results With the unmet need of supporting young people and families, the design of Lupus UK Youth will create a sense of belonging within a community amongst young people and families impacted by lupus and decrease isolation. An enhancement of empowerment will be achieved by providing opportunities for young people to share their stories through blog writing, social media campaigns, and partaking in focus groups. This will increase public awareness of challenges faced by young people with lupus as well as provide improved access to resources tailored to the needs of young people. Conclusion The creation of Lupus UK Youth is a vital step in addressing the social and emotional needs of young people with lupus and the impact this has on their families. By providing a platform of connection, awareness, and tailored support, it will significantly improve their quality of life and foster a sense of community. Various stories can be shared to help increase the understanding of having lupus and its impact on people around them. The value in creating an initiative dedicated to the lupus youth community and their families is crucial to ensure this demographic is seen and empowered, while not feeling alone in their journey, which many have felt before. Disclosure C.Y.T. Wong: None.