May is Lupus Awareness Month. Before I became an advocate for lupus awareness, I remembered having an acquaintance in college who had the disease. She didn’t share details, except for the side effects of the steroids she took to control symptoms, but we visibly saw its destructive effects on her joints, as her need for a cane made it difficult to get around on the hilly terrain of our Westchester, New York campus. I did not have a true understanding of the disease until years later, when I became a lupus research advocate and then a lupus patient. What is lupus? The Lupus Research Alliance describes lupus as a “chronic and complex autoimmune disease” affecting the joints, skin, brain, lung, kidneys, and blood vessels, causing widespread inflammation and tissue damage in the affected organ.”[1] Essentially, it is an autoimmune response that causes the body to attack its own healthy cells and organs. The common types of lupus are SLE (systemic lupus erythematosus), which affects multiple parts of the body, and cutaneous lupus, which primarily affects the skin, but certain medications can also trigger the disease. Lupus primarily affects women (9 out of 10 cases) and is typically diagnosed between the ages of 15 and 44.[2] It occurs in African-American, Hispanic, Asian and Pacific Islander, and Native American patients more often than Caucasians. Symptoms Lupus symptoms may differ from person to person and often mimic other symptoms, which can cause difficulty getting a confirmed diagnosis or a delay in getting a final diagnosis. Some symptoms include:[3]:
Fatigue
Fever
Joint pain, stiffness, and swelling
Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose or rashes elsewhere on the body
Skin lesions that appear or worsen with sun exposure
Fingers and toes that turn white or blue when exposed to cold or during stressful periods
Shortness of breath
Chest pain
Dry eyes
Headaches, confusion, and memory loss
Advocacy in Action Many organizations are doing excellent work in fundraising to provide grants to doctors for research efforts around lupus. Among their goals: to bring new drug therapies to market; to learn more about the disease; to bring awareness to communities around the country; and to develop clinical trials in conjunction with large research hospitals such as, Northwestern Memorial, Rush University Hospital, and University of Chicago Hospital Systems. I encourage you to look at the great work that these non-profits are doing. I have been a Volunteer Ambassador for the Lupus Research Alliance since 2006 and, during recent years (pre-COVID), the co-MC and Warm Up Instructor for the annual Chicago Walk. The Lupus Research Alliance is the largest private funder of lupus research, providing $200 million in grants in their history. I have supported this organization because 100% of donations raised supports research funding, as their Board of Directors support all administrative and operational expenses.
Due to COVID-19 precautions, we will once again not be able to have a live walk in 2021.
However, please join us on Saturday, May 22, 2021 for our virtual ManyOne Can. Walk with Us to Cure Lupus. At 12 noon CST, I will host a Zumba and fitness event. If you would like to join the class, please register on the page below (donation requested) to receive the Zoom Link for the event. You can also support our community team, or start your own fundraising page to support a cure for lupus, clicking the Team SC Community photo on the link below. I hope to see you there! https://give.lupusresearch.org/SaritaSC
[1] Lupus Research Alliance. (n.d.). About Lupus. Lupusresearch.org/Understanding-Lupus/What-Is-Lupus/About-Lupus/. Retrieved April 30, 2021. [2] Lupus Research Alliance. (n.d.-b). What is Lupus. lupusresearch.org/Understanding-Lupus/What-Is-Lupus/. Retrieved April 30, 2021. [3] Mayo Clinic Lupus Symptoms. (n.d.). mayoclinic.org/Diseases-Conditions/Lupus/Symptoms-Causes/Syc-20365789. Retrieved April 30, 2021. Sarita S. Connelly is a nonprofit management and equity and inclusion consultant and CEO/Founder of SS Connelly Consulting, LLC., and is a 2021 nominee for the Chicago Business Leaders of Color Award. A former Investment professional with 20yrs of experience, she is now additionally, an adjunct Instructor in the Department of Fine and Performing Arts at Loyola University Chicago, (where she serves on the DEI Task Force) and was a 3Arts Chicago Award Nominee for Choreography in 2019 & 2016.
A USMC Spouse (Ret.) and Mom of two, Sarita is an advocate for the arts, equity & inclusion, health & wellness, and military & veteran initiatives. She is a Volunteer Ambassador for the Lupus Research Alliance; serves on the Family Readiness Group for University of Chicago’s Office of Military Affiliated Communities; sits on the Advisory Boards of Roosevelt University’s Chicago College of Performing Arts & Blue Star Families Chicago Chapter; serves as the Senior Advisor for Para.Mar Dance Theatre; and sits on the Boards of the Oak Park Arts Council, Chicago Dance History