NACDD Partners Release Lupus Awareness Toolkit
Wednesday, May 15, 2019
Northwestern University, Brigham and Women’s Hospital, and Illinois Public Health Association Release Toolkit for Popular Opinion Leaders to Spread Awareness of Signs and Symptoms of Lupus
ATLANTA (May 9, 2019) — Northwestern University, Brigham and Women’s Hospital and the Illinois Public Health Association, in conjunction with community-based collaborators in Boston and Chicago, have developed a cutting edge and comprehensive toolkit to help spread awareness and education about lupus in African-American communities.
The toolkit uses a Popular Opinion Leader (POL) approach, which identifies adult community leaders (“POLs”) of all ages and in various community settings, to drive awareness and education of lupus signs and symptoms. Lupus is an autoimmune disease that attacks the tissues of the human body, such as blood, skin and kidneys, for unknown reasons. Symptoms include varied degrees of mouth sores, skin rashes, hair loss, fever, and chest pains, and can cause significant harm and even death if not diagnosed and treated early and appropriately.
Through a federal grant from the Office of Minority Health, OMH (1 CPIMP171141-01-00), Northwestern University and collaborators developed community-based tools designed to create and empower influential leaders from diverse, predominately African-American communities. From university student-leaders to religious and civic leaders, the POL approach arms individuals with the knowledge and tools to deliver educational information through their social networks. This POL approach begins with simple questions and conversations between friends, family members, and neighbors.
The toolkit turns average citizens into veritable experts to assist their peers at identifying and seeking treatment for Lupus. “Using peer influencers is the most cost effective and impactful way to activate community involvement in health promotion,” says Dr. Rosalind Ramsey-Goldman, an internationally recognized leader in lupus research and the principal investigator for the OMH grant.
Toolkit elements include: fact sheets, an in-person, train-the trainer model with PowerPoint slides, and video-based, role-playing demonstration modules for both POLs and physicians who see lupus patients. Tools allow community leaders to learn how to help expand access to care, reduce stigma, promote healthy behaviors and provide overall support to patients with lupus.
Rheumatologists are the medical experts in diagnosing and treating autoimmune disease such as lupus, however, the toolkit can help individuals without healthcare training as well as primary care providers to recognize signs and symptoms of lupus and partner with specialists delivering care for those with lupus. Sometimes patients may also see additional specialists such as dermatologists, nephrologists, hematologists, cardiologists, psychiatrists, or neurologists depending on their symptoms.
There is no cure for lupus. The most commonly used medications to manage lupus are anti-inflammatory medications, hydroxychloroquine (“plaquenil”), and medications that suppress the immune system. At times medications that thin the blood may also be used.
Anyone can get lupus; however, it is more common among racial and ethnic minorities, such as African Americans, Hispanics/Latinos, and American Indian/Alaska Natives.
Lupus is at least nine times more common in women compared to men and frequently occurs between the ages of 15 and 45.
Most patients with lupus are very sensitive to the sun and sunlight can cause flares of the disease in other organs. It is very important that patients with lupus wear sunscreen, hats and keep their skin covered. In most cases, patients with lupus can live active, normal lives with medical advice and treatment.
Today, there are varying reports of the estimated cases of lupus of up to 1.5 million individuals according to the Lupus Foundation of America. More work needs to be done to refine these estimates and reach out to those who might suffer with lupus and remain undiagnosed.
To gain access to this valuable toolkit, please contact the program manager, Karen Mancera-Cuevas. Her email address is firstname.lastname@example.org.
To learn more about Northwestern University’s Lupus Research, go to http://www.lupus.northwestern.edu/.
To request an interview with Dr. Ramsey-Goldman, please email email@example.com.
ProVention Health Foundation is a national, non-profit public health foundation dedicated to promoting the prevention of chronic and infectious diseases as well as associated risk factors. Visit www.ProVentionHealth.org.