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Closing the Loop for Lupus: A Wellness Toolkit for Women
December 5, 2022 @ 3:00 pm - 4:00 pm EST
Lupus is a chronic autoimmune disease characterized by widespread inflammation that often results in damage to the joints, skin, brain, lungs, kidneys and blood vessels. An estimated 1.5 million Americans have some form of lupus, and 90% are women between the ages of 15 and 44. Lupus is more prevalent among women of color, who also develop symptoms at younger ages and have more severe symptoms and complications from the disease.Systemic lupus erythematosus (SLE) is the most common type of lupus, affecting multiple parts of the body, and cutaneouslupus erythematosus (CLE) primarily affects theskin. Because the symptoms of lupus mimic other diseases, a majority of patients are initially misdiagnosed, and it can take up to 6 years and seeing multiplehealth care specialists before receiving an accurate diagnosis. Women living with lupus have a greater risk for developing other chronic conditions, such as heart disease and osteoporosis, or lupus nephritis due to kidney inflammation and damage. Although lupus does not affect fertility, pregnant women should be aware of potential complications, such as preeclampsia.
There is no cure for lupus, and the limited treatments available primarily focus on reducing symptom flares, resulting in insufficiently improved health outcomes.There is a pressing need to address gaps in research and clinical education, and to develop policy solutions that will eliminate barriers to access for treatments and quality care for women.
SWHR hosted a series of webinars to share educational information about the impact of lupus on women’s health.The events discussed how to improve health outcomes through recognizing and addressing symptoms, comorbidities, treatment options, and barriers to accessing quality care, while highlighting the diverse experiences of women living with lupus.
The SWHR Closing the Loop for Lupus series includes:
- Closing the Loop for Lupus in Women’s Health Care (June 15, 2022)
- A Fireside Chat (October 17, 2022)
- A Wellness Toolkit for Women (December 5, 2022)
Follow the conversation on Twitter at @SWHR and #SWHRtalksLupus.
This event is free and open to the public.
Goals
- Introduce autoimmune diseases and lupus, and their impacts on women
- Provide a holistic overview of treatment options for patients (including lifestyle and CAM approaches) and key considerations for chronic disease management
- Highlight information and wellness strategies from SWHR’s lupus patient toolkit
- Emphasize opportunities for women to improve their quality of care and overall health throughout the lifespan
Download Your Copy of the Toolkit!
Panelists
Anca Askanase, MD, MPH
Anca Askanase, MD, MPH
Dr. Askanase is the founder and director of the Columbia University Lupus Center and the Director of Rheumatology Clinical Trials. She is an internationally renowned clinician, diagnostician, and researcher with more than 20 years specializing in complex systemic lupus erythematosus (SLE). Dr. Askanase trained as a rheumatologist at New York University, where she remained for more than 15 years on faculty, directing clinical trials, training fellows and residents, and treating challenging SLE cases before moving to her current position at Columbia University Irving Medical Center. Dr. Askanase’s academic career has focused primarily on patients with SLE and other autoimmune diseases. In addition to authoring numerous publications and her involvement in benchmark clinical trials, Dr. Askanase is a member of several major international consortia aimed at providing the collaboration between lupus doctors needing to improve outcomes and therapies in lupus: the SLICC (SLE international Collaborating Clinics), the LNTN (Lupus Nephritis Trial Network), and the Lupus Clinical Investigators Network (LuCIN). One of her most rewarding experiences was her involvement in the studies that led to the FDA approval of belimumab, anifrolumab, and voclosporin. Dr. Askanase is also involved in the development and testing of new SLE outcome measures, telemedicine outcomes, new imaging methods for lupus arthritis, and interventions to improve clinical trial participation for disparate population as ways to improve the care and outcomes of lupus patients.
Rosalind Ramsey-Goldman, MD, DrPH
Rosalind Ramsey-Goldman, MD, DrPH
Rosalind Ramsey-Goldman, MD, DrPH, is the Gallagher Research Professor of Rheumatology at Northwestern University Feinberg School of Medicine (NUFSM) and an attending physician for Northwestern Medicine. She is the director of the Patient-Oriented Clinical Research Program in lupus with continuous funding from NIH, foundations, philanthropy, and industry since 1991 when she joined the faculty at NUFSM. Her research program examines risk factors to minimize complications in lupus including osteoporosis, malignancy, renal, and cardiovascular disease. Through national and international collaborations, she studies genetic risk factors for disease severity/susceptibility; collaborates on investigations studying pathogenesis of disease; develops disease classification criteria, flare assessments, nephritis guidelines, disease impact (damage and frailty), and assessment of patient-reported outcomes (including an investigator-initiated NIAMS/NIH funded clinical trial testing an intervention to mitigate fatigue, a pervasive problem affecting 90% of patients with lupus). She is active in designing, monitoring, and performing clinical trials, identifying novel biomarkers, and testing innovative therapies. Many of these clinical investigations incorporate analysis of lupus in multiethnic cohorts examining clinical, laboratory, and health related outcomes. An underlying theme for these investigations is a longstanding interest in documenting health disparities in lupus and experience working with communities.
Estela Mata-Carcamo
Estela Mata-Carcamo
Estela Mata is the President and co-founder of Looms for Lupus, a non-profit organization that provides lupus, fibromyalgia and mental health awareness, advocacy, and support to those living with these conditions, their loved ones, and caregivers. Estela has worked in healthcare for over 30 years, currently supporting private practices with electronic medical records, office workflows to help the practice and patients for a top leading healthcare organization. In 2011 she co-founded Looms for Lupus when her sister almost lost her life to Immune thrombocytopenia and Lupus; she is alive today because she advocated for herself. Estela has supported her sister and her passion to help others has evolved to illuminating, engaging, empowering and supporting the community as a whole to take control of their overall health care. For the past 11 years, Estela has co-facilitated support groups, led and participated in educational symposiums, advocated locally and nationally. As a community leader and healthcare advocate she partners, collaborates with initiatives including the U.S. Department of Health and Human Services’ Office of Minority Health and the U.S. Food and Drug Administration’s Office of Minority Health and Health to increase awareness on the need for diversity in lupus clinical trials. She is a Virtual Advisor Team member for both the All of us Research Program and the Scripps Research Digital Trials Center and participant in the Congresswoman Grace Napolitano’s Mental Health Consortium. Estela is an exceptional community engagement liaison for both English and Spanish speakers.
Sponsor
SWHR’s Lupus Program is supported by educational sponsorships by Aurinia Pharmaceuticals and Eli Lilly & Company. SWHR maintains editorial control and independence over educational content.
