Mar. 20, 2012

Lupus Foundation of America Addresses Lupus Communication Gaps

On Tuesday, March 20, Human Genome Sciences and GlaxoSmithKline released the results of a new survey highlighting a communication gap between people with lupus and the people who care for and about them. The Lupus Foundation of America (LFA) President and Chief Executive Officer, Sandra C. Raymond, issued the following statement regarding the survey results:

“Lupus is an unpredictable and incredibly complex disease that can impact every facet of a person’s daily life, including career, social, family, and physical and emotional well-being. The survey results highlight that lupus is challenging to live with, difficult to discuss, and often confusing to others who may not recognize the many ways lupus can affect a person’s quality of life.

“Every day representatives from LFA’s national network of chapters, our health educators, and support group leaders talk to people with lupus from across the country. We understand their frustrations as well as their feelings of uncertainty and self-doubt.  Family, friends, and employers often do not fully appreciate the fact that people with lupus can appear perfectly healthy, while at the same time be devastating ill.

“We want people with lupus to know they are not alone in their fight against lupus. The Lupus Foundation of America is working to help them have the best life possible by funding research, and providing support, information, and referrals.

“The Lupus Foundation of America is committed to developing new and innovative resources to ensure that all people touched by lupus have access to the information and support services they need. We provide a wide-ranging set of materials, programs, and tools to help people with lupus better understand, manage, and live with their disease. We want to help not only the person with lupus learn about the disease, we also want to empower them to educate others and communicate more effectively with their families, friends, and the health professionals they rely on for their physical and emotional well-being.

“As part of our comprehensive mission to improve the quality of life for all people affected by lupus, we are actively advocating for expanded funding for lupus research, education, support, and awareness programs. We continue to bring together representatives from government, academia, and industry to marshal greater attention and resources to address this urgent and significant national public health issue. People with lupus deserve more and we will not rest until they get it.”

Resource links:
LFA Resources

LFA’s Information Request Line (English and Spanish) – 800-558-0121

Lupus Foundation of America Web site – www.lupus.org

National Burden of Lupus Survey Backgrounder

Press Release from Human Genome Sciences and GlaxoSmithKline


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