Communication Gap for Lupus Patients- News Article


Lupus Foundation of America Addresses Lupus Communication Gaps

PR NewswirePR Newswire – Tue, Mar 20, 2012

WASHINGTON, March 20, 2012 /PRNewswire-USNewswire/ — 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. TheLupus 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.”

For more information about the survey or Human Genome Sciences (HGS) please visit,, and for information about GlaxoSmithKline, please visit

Resource links:

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

Lupus Foundation of America Web site –

About Lupus


Lupus is a chronic autoimmune disease in which the immune system is unbalanced, causing inflammation and tissue damage to virtually any organ in the body. Lupus can be unpredictable and potentially fatal. An estimated 1.5 million Americans and at least five million people worldwide have a form of lupus. Its health effects include heart attacks, strokes, seizures, miscarriages, and organ failure.

About the Lupus Foundation of America (LFA)


The LFA is the nation’s foremost nonprofit voluntary health organization dedicated to finding the causes of and cure for lupus, and providing support, services, and hope to all people affected by lupus. The LFA and its network of chapters, branches, and support groups conduct programs of research, education, and advocacy.

SOURCE Lupus Foundation of America