Despite progress in diagnosing and managing lupus, 43 percent of those with the disease worry about the physical inactivity and social isolation it causes, finds a new survey released May 10 — World Lupus Day — by the World Lupus Federation (WLF).
The Twitter poll, conducted among 2,048 people in nine countries, found that 47 percent of respondents say their doctors don’t fully understand the impact lupus has on daily living, while 30 percent said the emotional impact of the disease is unappreciated. Moreover, 47 percent of those polled said they want their physician to provide better management and treatment options.
The results come from a global online survey of more than 16,000 lupus patients that was developed by WLF and GlaxoSmithKline (GSK). The 37-page “Lupus Knows No Boundaries e-Report” brings together first-hand experiences of lupus patients, their advocates and those who treat them.
“The e-Report and Twitter poll findings show that more 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,” GSK global medical affairs official Alex Liakos said in a press release. “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.”
Added photographer, author, musician, philanthropist and global ambassador for the Lupus Foundation of America: “I first came to know lupus through my childhood friend, Lucy Vodden, about whom the song Lucy in the Sky with Diamonds was written. It was Lucy’s struggles that opened my eyes to how devastating the burden of lupus is on millions of individuals and their families.”
Fellow lupus advocate Shannon Boxx, a former member of the U.S. women’s national soccer team, won three Olympic gold medals before retiring two years ago.
“I decided to speak publicly about lupus because I was tired of hiding it,” she said. “I was at a point in my career where I knew I probably wasn’t going to play much longer and I felt I had a real responsibility, being in the public eye, to talk about lupus and bring more awareness.”
In recognition of World Lupus Day, patient organizations around the world are supporting WLF’s “Lupus Knows No Boundaries” campaign.
“We’re calling for everyone to unite and take action on behalf of those affected by lupus,” said Sandra C. Raymond, president and CEO of the Washington-based Lupus Foundation of America, which serves as the WLF’s secretariat. “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.”