Living with Lupus
I know lupus quite well. I spent the majority of my sophomore year dividing my time between hospital rooms and classrooms while physicians and specialists tried to figure out the cause of my symptoms. Constant muscle and joint pain was an obstacle for my normal activities. Severe fatigue made it hard for me to stay alert in class, let alone attend. And I will never forget the day I purchased a wig to cover my substantial hair loss. Nine months after the onset of my first symptom I was diagnosed with lupus. I was twenty years old.
At twenty-three I suffered from kidney failure. Approximately forty percent of people with lupus will experience some type of kidney complication. Born genetically predisposed to a kidney disease called “collapsing glomerulopathy,” lupus made this particular disease harder to identify and difficult to treat. I spent two years undergoing dialysis treatment before I received a kidney transplant which ensures a better quality of life.
I did not know the damage lupus could do to your body and life. My illness disrupted my education and post-graduation plans and led to a terminal illness. However, my experiences motivated me to get to know lupus better for myself and to help others. Since 2012, I have been involved with The Lupus Foundation of America’s Walk to End Lupus Now™ in Tampa, Florida. My fundraising efforts contributes to the foundation’s funds for education, research, and resources for individuals and families with lupus. Additionally my affiliation with the organization has created opportunities for me to share my story and advocate for people suffering from this devastating disease.
An estimated 1.5 million Americans have lupus but research shows that nearly two-thirds of all Americans know little or nothing about lupus beyond the name. Lupus is a chronic autoimmune disease that causes inflammation in various parts of the body. The disease can range from mild to life-threatening. Despite the widespread prevalence of lupus, research has remained underfunded relative to its scope and devastation.
In May 2015, during Lupus Awareness Month, the Lupus Foundation of America (Foundation) launched a national multi-media campaign called “KNOW LUPUS.” The Foundation is the nation’s leading organizations devoted to advocacy, education, research, and support for individuals and families affected by lupus. The goal of the KNOW LUPUS campaign is to bring greater awareness of lupus and raise funds for lupus research. “Everyone needs to KNOW LUPUS, to create a future with NO LUPUS.”
Based on a recent study, from the onset of symptoms, it takes an average of six years for a person to be diagnosed with lupus. Lupus occurs most often in women during their child-bearing years. In fact, ninety percent of people living with lupus are women. And while lupus affects people of all races and ethnicities, people of color (African Americas, Hispanics/Latinos, Asians, Pacific Islanders, and Native Americans) are diagnosed with lupus 2-3 times more often than Caucasians. Men and children can also be diagnosed with lupus. For people who develop the disease as children, lupus often affects major organs and is more physically damaging than for those who develop lupus as adults. This is due in part to the damaging effects of the current treatments for lupus. On average, people with lupus take up to eight prescription medications at a time to manage their symptoms. In addition to chemotherapy, other common treatments for lupus include immunosuppressants, corticosteroids, and anti-malarial medicines. Lupus and medication used to treat the disease have been associated with increased rates of seizure, infection and inflammation of the lungs and other organs, and heart disease. Lupus patients are twice as likely to develop cardiovascular disease. Although mortality rates for lupus over the past 30 years have fallen, deaths due to lupus-related cardiovascular complications have remained about the same. Although there is no cure for lupus, early diagnosis and proper medical treatment can significantly help to control the disease. The Lupus Foundation of America’s Walk to End Lupus Now™ are conducted nationwide to raise money for lupus research, education, resources, and to increase awareness. These events help fund an increasing number of research projects to better understand lupus, to look for new and improved treatments and, one day, to find a cure. Find ways to get involved in your community by visiting www.lupus.org.
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