Axial Spondyloarthritis pain project

I think it was 2020 or 2021 when we first discussed this project. I met Sarah as we were moving into the New Mills Marina, and she was moving out. I just started studying photography at Manchester School of Art, yes, at the peak of Covid, and when Sarah found out I am a photographer, she spoke to me about the idea she had of bringing awareness to the condition she lives with – AS, through a photographic project, and asked me if I would like to collaborte on it.

She envisioned using UV paint and light to emphasise the places of pain on her body. We discussed and acquired paint and lights, and I did some test shooting at home to see how it would look and prepare for the photoshoot. It was a very productive trial and gave me a good idea of how to proceed with the photo shoot in the studio.

Sarah has sent me some articles on AS to read and some other materials for inspiration, so I proceeded with my research. I think it was a crucial part of the process as I felt like I needed to understand this condition to accurately reflect what Sarah wanted to communicate through this photographic project.

I think it is essential that we live in a society where we try to understand each other as much as possible. I believe that through education on these matters, we become better members of society, better friends and family, better work colleagues, better, more empathetic and thoughtful individuals that improve the world with compassion and kindness.

RESEARCH

I read some interesting articles forwarded by Sarah, which gave me insight into how life looks like for people affected by AS.

National Axial Spondyloarthritis Society https://nass.co.uk/

I did research on NASS website, that has all the information regrading AS.

NASS is the he only charity in the UK dedicated to transforming axial SpA (AS) care in the UK.

Axial spondyloarthritis (axial SpA) is an inflammatory arthritis where the main symptom is back pain

Axial spondyloarthritis is an umbrella term and it includes:

Ankylosing Spondylitis (AS)

Where changes to the sacroiliac joints or the spine can be seen on x-ray.

Non-radiographic axial spondyloarthritis

Where x-ray changes are not present but inflammation is visible on MRI or you have symptoms.

Around 7 in 10 people with non-radiographic axial spondyloarthritis have visible inflammation in the sacroiliac joints or the spine when an MRI of the back is carried out.

Around 3 in 10 may not have any inflammation visible on MRI despite symptoms of back pain. Some may never go on to develop visible inflammation on MRI. The reasons for this are still not well understood but may be due to the sensitivity of MRI.

Typical symptoms of axial SpA include:

Slow or gradual onset of back pain and stiffness over weeks or months, rather than hours or days
Early-morning stiffness and pain, wearing off or reducing during the day with exercise
Persistence for more than 3 months (as opposed to coming on in short attacks)
Feeling better after exercise and worse after rest
Weight loss, especially in the early stages
Fatigue or tiredness
Feeling feverish and experiencing night sweats

What happens?

It’s a painful, progressive form of inflammatory arthritis. It mainly affects the spine but can also affect other joints, tendons and ligaments.

Other areas such as the eyes and bowel can also sometimes be involved.

Inflammation occurs at the site where ligaments or tendons attach to the bone. This is known as enthesis
The inflammation is followed by some wearing away of the bone at the site of the attachment. This is known as enthesopathy
As the inflammation reduces, healing takes place and new bone develops. Movement becomes restricted when bone replaces the elastic tissue of ligaments or tendons
Repetition of this inflammatory process leads to further bone formation and the individual bones which make up your backbone (vertebrae) can fuse together

Axial SpA in a nutshell – a brief overview of axial spondyloarthritis and ankylosing spondylitis (2022)