LOL: Lupus Out Loud
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.
• Symptoms: Affect multiple parts of the body, range from mild to severe and may come and go over time.
• Diagnosis: Challenging and may take years and a number of doctor visits to confirm.
Patients who participated in the filming of “Voices”, as well as Dr. Susan Manzi, a leading clinician and scientist in Rheumatology, are available to discuss how to communicate more effectively with physicians, friends and family, and the benefits of talking frankly.
“As a doctor, I want my patients to be as open as possible about how lupus is impacting them,” says Manzi. “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.”
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.
Additionally, more information about lupus can be found at www.usinlupus.com.