May 9, 2017 (Updated May 22, 2018) Washington DC – The World Lupus Federation released the first-ever global report that describes the impact of lupus on individuals, their family members, and caregivers. The “Lupus Knows No Boundaries e-Report” has been co-created by the World Lupus Federation and GSK. It is part of a range of collaborative activities to raise awareness of the global impact of lupus, address public misconceptions about the disease and empower the lupus community to serve the needs of those living with lupus.
The report brings together firsthand experiences of people with lupus, their advocates and healthcare professionals, to tell the real story of lupus, highlighting the ongoing physical and emotional needs of those who are affected by this incurable disease. The full report is available online at worldlupusday.org/e-report.html.
The World Lupus Federation, a global coalition of lupus patient groups, is working to raise the public profile of the disease. “We’re calling for everyone to unite and take action on behalf of those affected by lupus around the world. We have a common purpose of bringing greater attention and resources so we together can end the suffering caused by l and upus” said Kirsten Lerstrøm, Chair, Lupus Europe and former Co-Chair of the World Lupus Federation.
Emphasizing the global effort, Sandra C. Raymond, Chief Executive Officer of the Lupus Foundation America, which serves as the Federation’s Secretariat noted that the impact of lupus is wide-ranging. “By shining a light on lupus, we can ensure that friends and family, healthcare professionals, employers, government officials, health insurers and pharmaceutical companies are aware and informed of the many and varied challenges that people with lupus face.”
Public awareness of lupus remains stubbornly low, contributing to public misunderstanding and misconceptions about the disease. A 2016 global opinion survey* found that over half of the respondents (51%) were unable to identify the physical complications associated with lupus and more than a third (35%) did not even know that lupus was a disease.
“I first came to know lupus through my childhood friend, Lucy Vodden, about whom the song Lucy in the Sky with Diamonds was written,” said Julian Lennon, photographer, author, musician, philanthropist and global ambassador for the Lupus Foundation of America. “It was Lucy’s struggles that opened my eyes to how devastating the burden of lupus is on millions of individuals and their families.”
“The e-Report and Twitter Poll findings show that there is more that can be done to raise awareness, understanding, and prioritization of this debilitating disease and to give patients the confidence to speak up about the impact of their symptoms,” said Dr. Alex Liakos, Global Medical Affairs, GSK. “At GSK, we are delighted to have been able to collaborate with the World Lupus Federation and look forward to continuing to support the needs of those living with lupus in future campaigns.”
“It’s our responsibility to get involved and do whatever we can to help fight this unpredictable and misunderstood disease,” said Julian Lennon. “It is my goal to keep fighting and bringing attention to lupus so we can raise the money needed to develop better treatments, provide support to people affected and fund the research that someday will bring an end to lupus and its brutal impact on people’s lives.”
Learn more about lupus by downloading the “Lupus Knows No Boundaries e-Report” at worldlupusday.org.