My name is Chelsea, and I am the new Young People and Family Support Officer at LUPUS UK. I am incredibly excited to take on this role as I have several ideas that I hope will benefit the lupus youth community. I live with lupus myself, having been diagnosed 10 years ago at the age of 14. This experience, I hope, will be beneficial to me in this role as I never had this support growing up with lupus. So, what do I want to do? 

I created LUPUS UK Youth to provide a community dedicated to young people with lupus. We are now on Facebook and Instagram, where I spend time creating content for these pages on issues important to our community. It is important to me that I bring real voices into our new pages, which is why I have started asking for people in our community to step forward and share the realities of what it is like to live with lupus as a young person through social media campaigns. I am already so happy that people have sent in amazing videos sharing their stories with me and the wider community.

I am in the middle of creating various resources, upcycling ones we have already and creating new ones. Just some I am making just now are ones on transition from paediatric to adult services, medical gaslighting, and parents’ guide. I absolutely love making content and I am excited to publish these and more very soon. 

LUPUS UK currently do an amazing job in having support groups and regional groups. I want to bring more support groups for young people, including more virtual ones, and having the in-person support groups be held more regularly in a rotary basis around different UK cities so more people around the UK have an opportunity to come and meet others with lupus. This was something I never got the chance to do growing up, so I hope this will help our community grow closer together and with each other. 

Continuing on from this, I would love for our community to be more involved in events, taking part in them and giving our community a chance to share their stories with the world. I attended the WORD Day event in Liverpool in March, which was amazing as I got to meet others with rheumatic conditions and help with having a LUPUS UK stall. Giving people the confidence to advocate for lupus is a big goal of mine, and I hope I can help people feel like they can share their story and educate other people with the realities of lupus.

I have recently launched a new website for LUPUS UK Youth, where you will see more content dedicated to young people living with lupus and giving them a bigger space for them to share their stories.

I feel extremely lucky that I get to do all these wonderful things to help the lupus community, one that I am so incredibly passionate about. I hope you will come along with me on this journey to do more for LUPUS UK Youth!