A new e-report from the World Lupus Federation (WLF) has revealed that almost half (43%) of people living with lupus responding to a recent poll indicated that their biggest worry is the threat of physical inactivity and social isolation due to the debilitating effects the disease has on the body.

The “Lupus Knows No Boundaries e-Report” has been co-created by the World Lupus Federation and Glaxosmithkline (GSK) as part of a range of collaborative activities being coordinated around this year’s World Lupus Day. The report brings together first-hand experiences of people with lupus, their advocates and those who treat them. The full report is available to read/download below (14MB file);

READ/DOWNLOAD E-REPORT

“When I have a flare I’m not able to do anything; I struggle to do household chores, my husband has to do everything, my dog doesn’t get taken for a walk – I have to take to my bed sometimes, to rest and recover.”
Elaine Holland, Trustee of LUPUS UK & Chairperson of North West Lupus Group

Lupus is often a disease with few or no visible symptoms making it more difficult for others to appreciate the impact it can have on those living with it.

“People look at me and think I look well, but they don’t know what I’m feeling inside and what the fatigue is doing to me. I get funny looks if I use the disabled toilet in a restaurant – people think, ‘there’s nothing wrong with her, why is she using it?’, but they don’t  understand what it’s like to live with.”
Elaine Holland, Trustee of LUPUS UK & Chairperson of North West Lupus Group

“The new e-report from the World Lupus Federation (of which LUPUS UK is a founding member) aims to highlight the impact that lupus can have so that we can ensure that friends and family, health care professionals, employers, government officials, and pharmaceutical companies are aware and informed of the many and varied challenges that people with lupus face. The e-report shows that there is much more that can be done to raise awareness, and improve understanding of lupus.”
Chris Maker, CEO of LUPUS UK