A new GlaxoSmithKline led report, ‘A Vision for Lupus’, has been published along side World Lupus Day in order to help highlight gaps and inconsistencies in care and areas for action in the disease.
The initiative is in collaboration with a Global Multidisciplinary Steering Committee, and the report outlines three specific, patient-centred Calls to Action to the lupus community.
The report urges that we need increased awareness of lupus amongst the general public, people living with lupus, their families and healthcare providers to help those with the condition feel acknowledged, understood and supported. Also, improved access to specialist, multidisciplinary clinics and greater awareness of clinical trials to enable better research.
Alain Cornet, general secretary, Lupus Europe and Steering Committee member said: “The ‘A Vision for Lupus’ report is an important step towards changing the future for people with lupus, so that they have an improved quality of life, feeling acknowledged, understood and supported.
“We hope that this report will help as many people as possible get access to specialist and multidisciplinary lupus clinics where they can receive quality care for all aspects of this complex multisystem disease, and where they are encouraged and supported to take part in managing their own disease, whether through therapeutic education or participating in clinical research.”
Lupus affects 5 million patients worldwide, predominantly females, with common symptoms including painful and swollen joints, extreme fatigue, skin rashes, anaemia, and kidney problems. Severity of the illness can vary; some people with lupus can continue to live a normal life, while others experience frequent, life-threatening flares that require critical care but at present there is no cure for the disease.