By Rowan Lutton
As a teenager, I was always full of aches and pains. At first, my parents were assured that I was simply experiencing growing pains. But as I got older, the excruciating discomfort continued.
After numerous visits to the doctor, an orthopaedic specialist decided the pain was being caused by flat feet and I was given insoles to wear as a solution. They didn’t help, and through my 20s the issues I was experiencing intensified.
The pain was chronic and debilitating. It would shoot through my lower back and hips. It would wake me up at night and mean I was incredibly stiff in the mornings. It would ease throughout the day but return in the evening, completely immobilising me. It became so excruciating that, at times, I couldn’t get out of bed and was reliant on crutches.
During multiple medical appointments, I explained to my healthcare practitioner that my father lived with a condition called axial Spondyloarthritis (axial SpA).
Axial SpA is an inflammatory disease of the spine and joints. It causes inflammation where muscles attach to the bones, which is extremely painful. It’s incurable, but with the right treatment, people can live normal lives. On the flip side, if it’s left untreated, it can permanently fuse bones together. It’s often detected by testing for the gene HLA-B27 (though not everyone with the condition tests positive) and can be hereditary. However, I was assured at the time that ‘it was not something young women get’.
I spent 5 years seeing the wrong specialists, searching for answers and being told ‘it was inexplicable pain’. During this time, my mental health deteriorated. My education and career were severely impacted. Getting through college and university was a huge feat of endurance and I felt like my life was put on hold.
Finally, in 2001, I found a rheumatologist who diagnosed me with axial SpA.
Getting an official diagnosis was a huge relief but the wait meant permanent damage had already been done.
I waited for years to get my diagnosis of axial SpA, but I’m not alone. I know now that people in the UK wait an average of 8.5 years to get a diagnosis, but recent research by the National Axial Spondyloarthritis Society (NASS) has found that women wait approximately 2 years longer than men.
Even once diagnosed, the myth that woman can’t get axial SpA has cast a shadow over my treatment.
In 2018, I was at an appointment to investigate Hypothyroidism and gave my clinician a short medical history. Both the consultant and a junior doctor were in the room. When I mentioned I had axial SpA, the consultant raised his eyebrows and rolled his eyes at the junior doctor. When I questioned this gesture, he responded, “Well, it’s just not something we usually see in women.”
Thankfully, I’m stoic! I’ve read and researched plenty about axial SpA over the years, so I’m happy to correct misconceptions about the condition. However, many people, especially young women, find themselves in the position I was in 25 years ago and it’s time for that to change.
On 30 November, NASS published the results of its new research study – ‘What do patients value and need in the diagnosis, treatment and care of axial spondyloarthritis?’
The research found that women wait an average of 2 years longer than men for a diagnosis of axial SpA and have a significantly worse experience of care for the condition.
This research was funded by the Aspiring to Excellence programme which is led by NASS in partnership with BritSpA and the NHS Transformation Unit and sponsored by Abbvie, Biogen, Lilly, Novartis and UCB.