National Axial Spondyloarthritis Society
The National Axial Spondyloarthritis Society (NASS) have a wealth of resources on their website. Including information on exercising, medication and living with axSpA, plus information on all the services in your area. They also provide practical guides to managing flares and symptoms such as fatigue, in addition to how to manage your axSpA at work. NASS even have a "Back to Action" exercise program, which can be downloaded for free in pdf form. You can also download their Back to Action app free from the Apple store for your phone. They are currently having issues with the android version of the app, but hope to have it up and running soon.
The NASS YouTube channel is another amazing resource. It has a wealth of videos, conferences, and recorded Facebook live sessions that you can again access completely for free. Including videos ranging from "Coping with fatigue" and "Sleeping well with axial SpA", to high-intensity workouts or gentle yoga sessions. Check it out below...
ASone - bringing young people with axial SpA together
ASone is an additional website provided by NASS, specifically for younger people diagnosed with axial SpA.
As axial SpA is typically diagnosed in the 20's, this can be a particularly challenging time - as it is of course a critical age where we begin to navigate relationships, build careers and establish who we are. ASone was created to inform and educate on axial SpA. But also, importantly, to enable you to share your thoughts, feelings and experiences with each other.
The ASone website has blog posts and extensive information to help you manage your axial SpA. While there is also an opportunity to read about others experiences with the condition. Or to even write your own blog. Check out the website here: http://asone.nass.co.uk/; http://asone.nass.co.uk/express-yourself/
How to make the most of your virtual consultation
Regular appointments with your clinical team are obviously important for monitoring your condition, and ensuring that you are getting the best treatment possible for your axial SpA. However, this year has seen a lot of changes to the way in which we all engage with healthcare - including the introduction of virtual appointments. We have put together a list of resources below to help you prepare, navigate and hopefully make the most of your virtual appointments.
Back in July, NASS asked consultant rheumatologists how their practice has changed and what advice they can give to patients for their virtual appointments. The result is an excellent blog post providing some simple tips for how to make the most of your consultation: http://asone.nass.co.uk/making-the-most-of-your-appointments/. They have also created a useful virtual appointment resource sheet, to help you prepare are prioritise points that you wish to discuss: http://asone.nass.co.uk/wp-content/uploads/2020/07/Virtual_Appts_sheet.pdf
For personalised advice on getting the most out of your rheumatology telehealth visits, check out https://www.erheum.org/. From the non-profit arthritis community CreakyJoints, eRheum™ provides a FREE personalized guide for better telehealth visits.
The following video by the excellent Will Gregory may also be useful: Making the most of your virtual consultation.
Additional resources to help you manage your axial SpA symptoms from home
NASS advice and guidance on COVID-19 for people living with axSpA https://nass.co.uk/news/covid19-coronavirus/
NASS Community Engagement Events https://nass.co.uk/get-involved/nass-voices-community-engagement-events/
NASS YouTube channel with a wealth of videos, uploaded regularly: https://www.youtube.com/user/NASSCentral/videos. Including a selection highlighted below:
1. Emily Clarke: Motivation to exercise Facebook live https://www.youtube.com/watch?v=ds4xa2-CpM8
2. Zoe Clarke: Promoting emotional wellbeing https://www.youtube.com/watch?v=et0UPmYrlw8
3. Jamie Bolder and Geoff Lindsay: Gentle yoga for axSpA https://www.youtube.com/watch?v=kZoCl60uojM
4. NASS Physio in Focus conference, with talks on keeping motivated, the jaw and axial SpA, coping with fatigue, and sleeping well https://youtu.be/KJ9SbAFJhe4
5. Diane Aronson: An introduction to Acceptance and Commitment Therapy https://www.youtube.com/watch?v=YlIjc5MLuhM
AStretch Monthly Blog: https://www.astretch.co.uk/communications
Articles about telehealth, and how it can empower you to stay connected with your care outside of hospital: https://www.csp.org.uk/professional-clinical/digital-physiotherapy/telehealth ; https://creakyjoints.org/living-with-arthritis/coronavirus/daily-living/telehealth-helps-rheumatology-patients-keep-appointments/
Creakyjoints.org: Living with arthritis during coronavirus https://creakyjoints.org/category/living-with-arthritis/coronavirus/
Versus Arthritis: Coronavirus and managing pain at home – your questions answered https://www.versusarthritis.org/news/2020/april/coronavirus-and-managing-pain-at-home-your-questions-answered/
On the RNHRD website, our brilliant, specialist team of physios, who I am sure many of you will be familiar with, have put together a series of videos and simple exercises that you can watch and complete from home. Check them out below and let us know what you think!
You can also find information regarding the RNHRD rehabilitation programme for axSpA, which is currently running virtually as a 1-week online Zoom course during the pandemic.
AxialSpondyloarthritis.net is an excellent resource and online community for people affected by axial spondyloarthritis (AxSpA). Learn, share, and connect with peers and healthcare professionals.
Twitter can be a great place to stay up to date with any ongoing research in axSpA, in addition to the work of NASS and other charities/ organisations. Some excellent accounts to follow on twitter:
You can also follow our research assistant Rosie Barnett for all Project Nightingale-related updates: