Video: Living with Lupus

Approximately 322,000 Americans have systemic lupus erythematosus (SLE), a common form of lupus, but the burden of the disease still remains largely unknown to the public. Results of a new GfK Roper North America survey of the lupus community released on March 20 found that communication challenges are significant between people with SLE and their physicians and supporters (family members or friends):

- Eighty-seven percent  of people with lupus in this survey admitted minimizing their pain and worries to avoid upsetting their families.
- Fifty-two percent  of patients reported that they minimize their symptoms when they talk to their physicians; conversely, 72 percent  of physicians surveyed were not aware of patients minimizing their symptoms.
- Seventy-eight percent  of supporters describe themselves as very supportive, yet only 52 percent  of patients say their family and friends are very supportive and only 34 percent  of doctors perceive a patient's family and friends as "very supportive." 
- Eighty-one percent  of patients surveyed compared lupus with being on a rollercoaster, as they never know what to expect.
- Sixty-eight percent  of patients said lupus affects virtually every relationship they have, and a similar number (74 percent ) of lupus supporters agreed.

About Systemic Lupus Erythematosus
Lupus is a chronic, autoimmune disease that can range in severity. It is also a disease of flares and remissions that can affect the everyday lives of people with lupus.

About the Burden of Lupus Survey
The survey was conducted by GfK Roper North America from July through September 2011. It involved 502 people who self-reported that they had received a diagnosis of lupus, 204 supporters (family members or friends) of people with lupus and 251 rheumatologists (physicians who specialize in treating lupus). The survey was funded and developed by Human Genome Sciences and GlaxoSmithKline.