Your SpAce

The National Axial Spondyloarthritis Society (NASS) has launched new resources for people living with axSpA to get the most out of their medical appointments and navigate their care.

Together with people with people living with axSpA and healthcare professionals, they created short information and lived experience videos covering a range of topics in their Your SpAce programme, including:

• Pain
• Flares
• Fatigue
• Making medication decisions
• Getting the most out of appointments

Advice on activity, exercise, and mental health is woven into all the topics. Alongside the videos, there are downloadable worksheets so people can build a practical toolkit to manage their axSpA and the impact it has on their life. Over 23,000 people have visited Your SpAce since March 2023 and the videos have been viewed over 17,000 times.

The content is free to access on YouTube and the NASS website. Translation is available for the webpages, which includes video transcripts, and auto-translated subtitles are available on the videos. It’s easy to dip in and out of the topics, to access what’s most needed at the time.

Since April 2023, NASS has run free monthly online meeting with over 450 attendees. Attendees are mainly in the UK, but people have joined from the Netherlands, USA, and Australia. The meetings have provided a welcoming community for people to meet other people with axSpA, often for the first time, and share advice with each other.

NASS Programme Manager, Zoë Clark, is presenting the results of Your SpAce at EULAR Congress and is keen to connect with other people who are attending. The session is ‘Exploring self-management: definitions and life’ on Saturday 15 June at 11:45 CEST. Please get in touch with Zoe (zoe@nass.co.uk) if you’re interested in meeting during the conference.

Zoë is happy to speak to patient organisations that are interested in developing similar programmes to Your SpAce and share NASS’ learning and experiences.

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