Perspectives on PANS was probably the most validating thing I’ve been a part of. To share stories with others and see your own experiences mirrored in what they say. We are fighting not only for the kids of today but for the generations that come next. 

There was a lot of data and research shared by experts, which was really interesting to learn about. For example, 70% of PANS patients meet diagnostic criteria for ME/CFS which is one of the conditions I was diagnosed with prior to getting my PANS diagnosis. Another stand out statistic was that 40% of PANS patients have a type of dry arthritis. I’ve joked for years that I feel like I’ve got arthritis not realising that it could actually be true. I must also make clear that these statistics are reversible with prompt treatment of PANS PANDAS.

Throughout the day, I had quite a few people ask me about the PANS PANDAS UK Youth Board, the age range for joining youth board is 8-25 and we have a good range of ages already members. It is a low pressure environment with kids able to engage as little or as much as they’d like. While of course we do talk about the conditions, we also talk about lots of other things with one of our favourite topics being pets! We have a Discord which is always open to chat on with categories such as: gaming, creativity, teddies, pets, music, books, school and general chat. Additionally we meet online every six weeks for a chat and to help with projects. It is a fun and supportive group to be a part of. 

Perspectives on PANS was a very emotional day. Starting with me trying not cry on stage, and ending with me trying not to cry while listening to the PANS PANDAS UK choir. I’d like to say thank you to everyone who made the day happen. I met some truly lovely people and finally put some names to faces. There were many people who came to chat with me, I’m sorry if I missed you! 

My message to parents:

“It’s not about having all the answers, just walk with us through the storm, be our rock, our safe place”