"Lupus Out Loud" Movement Inspires Patients to Speak Out About Their Symptoms

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Launching today in celebration of World Lupus Day and Lupus Awareness Month,Lupus Out Loud, 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.

"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," saidSusan Manzi, MD, 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 Loudmovement 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."