LOL?! Lupus Out Loud 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 that found over half (52 percent) of patients with lupus surveyed reported that they minimize their symptoms when speaking with their doctor.
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“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, MD, MPH, Co-Director of the Lupus Center of Excellence and Chair of the Department of Medicine of West Penn Allegheny Health System.
Lupus Out Loud encourages lupus patients to pledge to make an appointment with their doctor and to speak frankly about the true impact of lupus on their daily lives. In addition, Lupus Out Loud’s new video “Voices” features several lupus patients across America and illustrates that the collective voice is more powerful than one voice.
• Prevalence: About 90 percent of people diagnosed with lupus are women; the disease is more common in women of African American, Hispanic, Asian, and Native American descent than in Caucasian women.