Largely unspoken about, lupus can cause severe damage to the body’s organs, but a lack of awareness is creating long wait times for diagnosis and leaving people living with the condition at risk.
It is thought that around one in every thousand people in the UK have lupus, but the condition often carries misconceptions due to its fluctuating nature. Lupus Awareness Month, occurring annually in October, is an opportunity for organisations like Lupus UK to share essential information and advice.
Diagnosis
In the UK it takes an average of six and a half years from the onset of symptoms to receive a lupus diagnosis. Figures like these are what’s pushing Paul Howard, chief executive at Lupus UK, to create change.
“A lot of people haven’t even heard of the disease when they’re first diagnosed with it and so diagnosis can be very scary,” empathises Paul.
“We want to make sure that people are able to access support services and speak to other people for reassurance.”
Lupus is an incurable immune system illness that can affect any part of the body, manifesting in symptoms like anaemia, mouth ulcers and hair loss. If the condition goes untreated, it can lead to irreparable damage to the body’s organs.
Hidden
Symptoms of lupus are often inconsistent between cases, translating into long wait times for diagnosis and in turn, treatment.
“That length of time is going to have an impact on not just their working life but their relationships, their social life and all in all their quality of life, not to mention they could be accumulating damage which will affect their long-term health,” explains Paul.
Like 80 per cent of disabilities lupus is a hidden condition, but due to its fluctuating nature, it can sometimes be difficult to categorise as a disability, leading to further challenges in gaining proper support, Paul says:
“Lupus is a tricky one when it comes to disabilities and seeking assistance such as applying for a blue badge or disability benefits, partly because it’s invisible and because it’s rare so assessors don’t often know very much about the condition.”
Awareness
In order to speed up the timeframe for diagnosis and ensure people get essential treatment, there has to be a greater awareness of what the condition is and how to spot the symptoms.
“The public, but also the medical profession, need to be more aware of lupus and the signs to look out for,” emphasises Paul.
“Many people are dismissed, they’re advised that their condition is related to stress or some other mental health condition rather than it being an official autoimmune condition.”
Public awareness is also a key part of the month-long campaign, with the charity often hearing accounts of abuse when people with lupus use amenities like disabled parking bays.
“People are harassed because they don’t look ill or they don’t look disabled and obviously that’s incredibly stressful and upsetting,” states Paul.
More awareness of lupus, and other hidden health conditions, can only be a positive step, creating greater understanding for people at the stage of diagnosis and for the wider public.
Lupus UK can provide information and support along with resources for Lupus Awareness Month.
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