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How many people in the UK are currently living with an undiagnosed case of lupus?

Written by Samantha Lade, Donr

Published on Tuesday, 2nd October 2018

How many people in the UK are currently living with an undiagnosed case of lupus?

An online survey has shown that almost two-thirds (64.7%) of LUPUS UK supporters first heard about lupus when either they or a family member were first diagnosed with the condition.

'I'd never heard of it until it was mentioned to my dad. We came home, googled it and got frightened, but I also had a feeling that I had it too. The skin hospital tested me too and, low and behold, we both had it.'

In another survey of LUPUS UK members it was revealed that it takes an average of 6.4 years from the onset of first symptoms to get a diagnosis of lupus in the UK. 

Shockingly almost half (46.9%) the patients were initially misdiagnosed with approximately 30 different illnesses cited.

Chris Maker, CEO of Lupus UK, said: 'It is very difficult to accurately determine how many people are affected by lupus in the UK. 

'Various studies have shown estimates of between 1 in 1,000 and 1 in 4,000 people with a diagnosis of lupus in the UK, but we don't know how many others may be living with either no diagnosis or an incorrect diagnosis.'

October is Lupus Awareness Month in the UK. It is an important opportunity to raise awareness of the disease amongst the public and medical profession as well as improving the understanding of the impact that lupus can have.

In 2018, LUPUS UK are educating people about the common symptoms of lupus and how it is diagnosed so that more people can get control of this serious and potentially life-threatening condition.

Chris continued: 'The diagnosis and treatment of patients with lupus in the UK has often been inconsistent, with those seeking a diagnosis often facing delays of several years and experiencing uncertainty about their treatment.

'We hope better awareness of the condition will reduce the current diagnosis times and result in earlier access to appropriate treatment, reducing flares and, ultimately, giving a better quality of life for patients.'

For further information, please visit the LUPUS UK website.