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Helping Solve the Cruel Mystery

By: Erica Dimitropoulos, Senior Staff Editor

Lupus is highly unpredictable and occurs without warning; there is no known cause and no known cure. It affects over 1.5 million Americans, 90% of whom are women between the ages of 15 – 44.1 No two cases of lupus are alike, making it a very difficult disease to understand and diagnose. A typical lupus “flare” can be characterized by any or all of the following: joint pain and swelling, muscle pain, fever, headache, extreme fatigue, chest pain, shortness of breath, nausea, vomiting, abdominal pain, and skin rashes such as a maculopapular rash (a characteristic “butterfly” rash on the face).2 Although there is no cure for lupus, various treatment regimens exist to lessen symptoms and alleviate pain. For example, nonsteroidal anti-inflammatory drugs (NSAIDS) and corticosteroids are generally used to control flares, and immunosuppressive agents and antimalarials have been used for long-term therapy.2

On March 9, 2011, belimumab (Benlysta®) was named the first approved treatment for patients with active, autoantibody-positive lupus in over fifty years.2 Scientifically, Systemic Lupus Erythematosus (SLE) is a multi-system autoimmune disease wherein one’s immune system attacks its own otherwise healthy cells and tissues, causing damage and inflammation to joints, skin, and various organs throughout the body.3 Therefore, this relatively new drug was created to work against the large numbers of autoantibodies that are produced by over stimulated B cells, which otherwise bind to self-antigens and form immune complex depositions that cause inflammation and tissue damage throughout the body. Belimumab works specifically by binding to a protein called BLyS (B Lymphocyte Stimulator), thereby blocking its ability to bind and activate the potentially destructive autoreactive B cells. 2

Evident by its approval, belimumab has provided statistically significant relief to many lupus patients, particularly those with muscle pain and inflammation. While it is currently available as a monthly intravenous infusion, belimumab is undergoing Phase 3 Clinical Trials (BLISS-SC) to evaluate its efficacy and safety as a weekly subcutaneous injection, a dosage form that could change the lives of lupus patients.4 However, belimumab is not approved in patients with lupus nephritis or lupus vasculitis, has not been studied in combination with other biologic therapies, and has been shown to be less effective in African American patients who comprise the majority of the lupus population.5 These concerns are being addressed through several clinical trials aimed at treating the different subtypes of lupus.

On May 22, 2013 Mayor Michael Bloomberg and the New York City Council officially proclaimed May as Lupus Awareness Month.6 New York City was painted purple to spread awareness to “help solve the cruel mystery” of this unpredictable and misunderstood autoimmune disease.1 Throughout the month, various informationals and promotions were held all around the city, hoping to catch the eyes of busy New Yorkers as they passed. For instance, Saks Fifth Avenue on 49th Street and 5th Avenue created a window display that urged people to “Put on Purple,” otherwise known as POP, on Friday, May 17. Furthermore, on Saturday, May 18, the entire South Street Seaport was flooded with people who came out to support the Walk to End Lupus Now™, despite the undesirable weather conditions.

Although much about Lupus has been discovered over the past few decades, a cure for this incomplete mystery is still being sought. Helping to spread awareness, even beyond the newly proclaimed month of May, can generate funds to promote research that may change the lives of millions worldwide. As Susan Golick, Founder and co-Vice President of the S.L.E Lupus Foundation, passionately pledged, “We will not stop until every person you might stop on the street can answer the question ‘What is Lupus?’”6


  1. Lupus is a Cruel Mystery. Lupus Foundation of America. Retrieved June 11, 2013, from http://www.cruelmystery.org/index.html.
  2. Erica Jefferson. (March 9, 2011). News & Events. U.S Food and Drug Administration. Retrieved January 20, 2012, from http://www.fda.gov/newsevents/newsroom/pressAnnouncements/ucm246489.htm.
  3. La Cava, A. (October 4, 2010). Targeting B Cells with Biologics in SLE. Expert Opinion on Biological Therapy, 10(11), 1555-1561
  4. Press Release. (December 15, 2011). GlaxoSmithKline and Human Genome Sciences initiate phase III trial of belimumab (Benlysta®) administered subcutaneously in subjects with systemic lupus erythematosus. GlaxoSmithKline USA. Retrieved January 20, 2013, from http://us.gsk.com/html/media-news/pressreleases/2011/2011-pressrelease-
  5. JPMorgan Global Healthcare Conference 2012. (January 9, 2012).  Human Genome Sciences Reports Progress with Commercialization of BENLYSTA® and Announces 2012 Goals at JPMorgan Healthcare Conference. Business Wire. Retrieved January 20, 2013, from http://www.businesswire.com/news/home/20120109006009/en/Human-Genome-Sciences-Reports-Progress-Commercialization-BENLYSTA®.
  6. New York City Council Proclaims May Lupus Awareness Month. S.L.E Lupus Foundation. Retrieved May 22, 2013, from http://www.lupusny.org/news/foundation-news/2013/05/22/new-york-city-council-proclaims-may-lupus-awareness-month
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