#Breakingthebias: Misdiagnosed, Misunderstood and Misrepresented

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08.03.2022

On International Women’s Day 2022 we are #breakingthebias by launching our work looking at the issues that women face in axial SpA.

The Biological Issues

We have known for a long time that there are biological differences between men and women when it comes to axial SpA.

  • Women are more likely to have non radiographic axial spondylitis (changes on MRI) rather than ankylosing spondylitis (changes on x-ray), which is where the myth it is a ‘man’s disease’ comes from
  • They also have a higher disease burden
  • Women present with more subjective symptoms
  • There is also a reduced response to biologic treatment
  • A difference in the kidneys and liver to men means there is a difference in processing medication
  • Axial SpA is often misdiagnosed as endometriosis and other similar issues
  • Most research and literature relates to men or mixed
  • There is a lack of research into menstruation, pregnancy and menopause

The Social Issues

We know from our members and supporters how difficult it can be for women to get their initial diagnosis, often being told it is ‘all in their head’ or that axial SpA (ankylosing spondylitis) is a man’s disease.

  • The majority of specialists are men – although in rheumatology the numbers are more 50/50
  • There are underlying attitudes to women within the NHS with men regarded as ‘stoical and silent’ whereas women are regarded as ‘hysterical hypochondriacs’
  • There is a lack of discussion on reproductive health, hormones and their effect on axial SpA
  • Also socio-economic factors such as women on average receiving lower wages leading to poorer health outcomes

This is why we are determined to shine a light on the issues faced by women with axial SpA both clinically and socially. The first step will be a series of focus groups, the first of which will be on 21 and 24 March 2022.

Join us in our campaign Misdiagnosed, Misunderstood and Misrepresented.

Email Jill Hamilton on jill@nass.co.uk to sign up and be a part of our efforts in #breakingthebias in axial SpA.