Last updated on April 18, 2014 at 17:24 EDT

“Lupus Out Loud” Movement Inspires Patients to Speak Out About Their Symptoms

May 10, 2012

ROCKVILLE, Md. and RESEARCH TRIANGLE PARK, N.C., May 10, 2012 /PRNewswire-USNewswire/ — Launching today in celebration of World Lupus Day and Lupus Awareness Month, Lupus Out Loud (www.lupusoutloud.com) is a new online movement and video developed to encourage people with lupus to speak “out loud” about their symptoms. The movement was inspired by the results of a recent Roper survey in which over half (52 percent) of patients with lupus surveyed reported that they minimize their symptoms when speaking with their doctor.[1]

(Logo: http://photos.prnewswire.com/prnh/20120510/DC04494LOGO-a)

(Logo: http://photos.prnewswire.com/prnh/20120510/DC04494LOGO-b)

“Common lupus symptoms – including fatigue and pain – can be invisible to others, so many patients feel isolated and alone. Further, in an effort to not burden their family or physician, patients often underplay what they are actually experiencing,” said Susan Manzi, M.D., MPH, Co-Director of the Lupus Center of Excellence and Chair of the Department of Medicine of West Penn Allegheny Health System.

“As a doctor, I want my patients to be as open as possible about how lupus is impacting them. Lupus Out Loud encourages patients to put lupus front and center and to speak out about all of their symptoms. This communication is critical, because the more information I have, the better care I may be able to provide,” continued Manzi.

The video titled “Voices” is a creative depiction of how the collective voice can inspire change. It was produced to encourage patients – all across America, all at once – to speak openly about their symptoms to their friends, families and most importantly, to their doctors.

Approximately 332,000 Americans have systemic lupus erythematosus, or SLE, a chronic, autoimmune disease that can range in severity, primarily affecting women of childbearing age. For these patients to receive optimal care, it’s essential they have a strong relationship and partnership with their doctor.

Through Lupus Out Loud, patients and those who support people with lupus can:

  • View and share a new video “Voices,” which features the following lupus patients across America:
    • Bridget H., Living with lupus since 1987, Corona Del Mar, CA
    • Rena B., Living with lupus since 1994, Chicago, IL
    • Cathy E., Living with lupus since 1983, Raleigh, NC
    • Persha G.C., Living with lupus since 2003, Germantown, MD
  • Take the pledge to make an appointment with their doctor this May and to speak frankly with their doctors about what it’s like to live with lupus.
  • Learn more about the Roper survey and why it’s important for them to speak openly and honestly with their friends, family and doctor.
  • Find various resources to help them better understand and manage their lupus.

“Sometimes it feels like there are no words to describe the difficulty of living with lupus,” said Persha. “The Lupus Out Loud movement is truly motivating because it brings people with lupus together and reminds us that, together, by speaking out about our symptoms – big and small – we can make a difference in our lives.”

About the Roper Survey
Additional data gathered from the Roper survey, which underscores why it’s important to speak out about lupus, include:

  • 87 percent of people with lupus in this survey reported that they minimize their pain and other disease-related concerns to avoid upsetting their families.[2]
  • Almost half (48 percent) of patients say they have difficulty describing their symptoms to their doctor.[3]
  • Nearly three-fourths (72 percent) of doctors surveyed said they were not aware of patients minimizing their symptoms.[4]

The survey was conducted by GfK Roper Public Affairs and Communications (GfK Roper North America or Roper) from July through September 2011. It involved 502 people who self-reported that they had received a diagnosis of lupus, 204 supporters of people with lupus and 251 rheumatologists (physicians who specialize in treating lupus).

Lupus Out Loud and the Roper Survey were funded and developed by Human Genome Sciences and GlaxoSmithKline. Dr. Susan Manzi serves as a consultant to Human Genome Sciences and GlaxoSmithKline and the individuals featured in the “Voices” video are patients with lupus who have received payment from Human Genome Sciences and GlaxoSmithKline.

People with lupus and those who care for them can visit www.usinlupus.com for online support, information and inspiration. For additional information on lupus, visit the Lupus Foundation of America at www.lupus.org, the Lupus Research Institute at www.lupusresearchinstitute.org, the Alliance for Lupus Research at www.lupusresearch.org, and the National Institute of Arthritis and Musculoskeletal and Skin Diseases at www.niams.nih.gov. Except for usinlupus.com, the websites listed are external to Human Genome Sciences and GlaxoSmithKline. Human Genome Sciences and GlaxoSmithKline do not have control over the content of the information provided on these websites and therefore do not warrant their accuracy or completeness.

For more information about Human Genome Sciences (HGS), please visit the company’s website at www.hgsi.com.

For more information on GlaxoSmithKline, please visit www.gsk.com.

[1] National Burden of Disease Survey (19% strongly agree / 33% somewhat agree), patients statistic “I tend to minimize my symptoms when I talk with my physician”

[2] National Burden of Disease Survey (46% describes very well / 41% describes well), patients statistic “I minimize the pain or worries I experience because I don’t want to upset my family”

[3] National Burden of Disease Survey (21% strongly agree / 27% somewhat agree), patients statistic “I have difficulty describing my symptoms to my physician”

[4] National Burden of Disease Survey (43% somewhat disagree / 29% strongly disagree), physicians statistic “My patients minimize their symptoms when speaking with me”

Diana Torres
(212) 819-4895

SOURCE Human Genome Sciences and GlaxoSmithKline

Source: PR Newswire