October is Lupus Awareness Month and, taking a look at the results of a recent online survey carried out by Lupus UK, there is still much to do to raise awareness of the condition.
Lupus UK is the national charity for the chronic condition and offers support and advice to those affected by it. The charity has carried out an online survey which has revealed that a large portion (64.7%) of Lupus UK supporters had not heard of the disease before a family member or friend received a diagnosis.
The results also indicated that it takes on average 6.4 years from the onset of symptoms for a diagnosis to be given. And close to half (46.9%) of all those with lupus were initially given a misdiagnosis; with a plethora of different conditions being among those initially diagnosed.
Lupus: an introduction
Lupus is the more frequently used name for systemic lupus erythematosus (SLE). The multisystem, autoimmune condition can cause extreme fatigue, muscle and joint pain and skin reactions to UV exposure; although symptoms can vary greatly depending on the patient. For some, the condition can be serious and lead to heart, lung or kidney problems. (You can read more about the symptoms on our What is Lupus? page.)
The exact cause of lupus is unknown. Lupus can affect people of all backgrounds. However, women between the age of 15-45 and people from certain ethnic backgrounds, including African-Caribbean and South Asian, are more likely to develop the condition. It is still unclear why these specific groups may be more prone to the disease.
Lupus is an often misunderstood and complex condition which can lead to extremely serious and debilitating health problems. Not everyone with lupus will experience severe symptoms. The nature of lupus means that those diagnosed might go through periods where the condition is active and periods of remission. This means that symptoms are not always apparent.
The condition is usually managed through a combination of medication and lifestyle changes.
Why is more awareness needed?
Common misconceptions and a lack of knowledge about lupus are thought to contribute to the delays experienced by some patients in receiving a diagnosis.
Lupus can be difficult to diagnose due to its wide ranging symptoms and the lack of a single definitive test. Patients who feel that they have long-standing or unexplained symptoms should see their GP.
Chris Maker, CEO of Lupus UK, explained the importance of Lupus Awareness Month:
‘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.’
Throughout the month of October Lupus UK wants to broaden awareness of the condition amongst the general public and healthcare professionals.
Head over to Lupus UK for expert advice on the condition and how you can get involved with Lupus Awareness Month.