On July 5, 2005, my life drastically changed. I was diagnosed with Lupus. It was an unexpected blow that left me feeling sad, hurt, and overwhelmed with questions. When I was first diagnosed with Lupus, my dermatologist was the one who tested me by doing a skin biopsy. I had a small rash on my arm that did not go away with the normal topical treatments prescribed by my family practice doctor. He advised me to see my dermatologist. Dr. Quarles took one look at my arm and quickly did a skin biopsy because he already had an idea of what was wrong. He told me he suspected I had discoid lupus. Discoid lupus mainly affects the skin. I had no idea what lupus was, but I had heard the word before. Like most people, I immediately searched the internet and startled myself even more. A lot of People have died from lupus complications according to the internet research. When I was called in for my biopsy results, they revealed that I had lupus. My heart dropped, and it was as if someone knocked the breath out of me. It was overwhelming because of all of the information that I was given and instructions. The thought of not being able to be out in the sunlight for prolonged periods of time and taking medication for the rest of my life crippled me. I was a very active young 32 year old woman who enjoyed playing basketball and baseball with my three young sons. I enjoyed going to the beach to sit by the water with my husband. I had just earned my Master’s Degree, and was planning to go to Law School. Not knowing what to expect made me feel insecure. I felt alone because I didn’t know anyone else with it. In November 2005, my symptoms started to worsen. I thought it was due to side effects caused by the medications the doctors prescribed. On January 11, 2006, I was hospitalized for the first time with pneumonia and a pulmonary embolism. The doctors finally made the determination that I did not have discoid lupus, but Systemic Lupus (SLE). SLE is when lupus affects any and every body part. SLE most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys, and nervous system. It is unpredictable and can be fatal. My lupus had progressed quickly and severely. I was in and out of the hospitals and nursing homes from January until June 2006 and many times thereafter. I suffered from pneumonia, pulmonary embolism, a mild stroke, meningitis, epilepsy, and so many other afflictions due to my lupus, but here I STAND!! I had to go through chemotherapy treatment for six months in 2012, 2014, and I just finished another 6 treatments of chemotherapy in March 2018. Since my diagnosis in 2005 and after my life threatening situations, I am determined to not allow lupus to win! My family has been right by my side, and my children had to watch their Mom endure so much. I refuse to let them see me go down without a fight. I needed to let my children see that you can do all things through Christ who strengthens you. My faith in God has kept me through all situations. Things in life happen to you for a reason. It is how you allow things to affect you that determine the outcome. My challenges with lupus have made me stronger in many ways. I have spent the past 12 years fighting to raise awareness about lupus and sharing my experiences to help other lupus patients. Speaking out about lupus and educating people is necessary if we want to have a life with no lupus. Lupus is so misunderstood and often misdiagnosed because it disguises itself as so many other things which can lead to deaths that could have been prevented. I have met so many lupus patients who did not talk about their illness because they were ashamed or felt alone. They have shared with me that I motivated and encouraged them to speak up. Lupus affects approximately 1.5 million Americans and more than 80,000 in DC, Maryland, and Virginia alone. This chronic, debilitating autoimmune disease attacks the skin, joints and organs. It is not terminal or contagious, but can be life threatening. Currently, there is no cure. Lupus patients face a daily struggle with chronic fatigue, joint pain, and numerous complications. Unfortunately, because most lupus patients do not look sick, they often feel alone and isolated.
I was determined to get more resources available to lupus patients in the Hampton Roads community, so I worked with the Lupus Foundation of America DMV Chapter to bring their Walk to End Lupus Now to our community. The immediate past CEO of the Lupus Foundation of America DMV Chapter, Jessica Gilbert, asked me to Chair the Walk to End Lupus Now in Hampton Roads because she knew that I had participated in the Walks in Richmond every year. In 2015, Hampton Roads residents were able to participate in the first nationally recognized Walk to End Lupus Now in our community. We rose over $48,000 for our first Walk to provide necessary resources and emergency assistance to lupus patients in our area. Since the first year, the Walk to End Lupus Now in Hampton Roads has had celebrity Grand Marshal’s such as Ms. Evelyn Braxton, the mother of Grammy Award winner and lupus survivor Toni Braxton. The Lupus Foundation of America DMV Chapter folded in 2017, and the national office took over the area. The national Lupus Foundation of America does not offer the emergency financial assistance nor do they offer any of the resources that the DMV Chapter offered. Their main focus is on research, and all funds that we worked so hard to raise was not going to be used to provide any other assistance to survivors.
I am passionate about helping lupus survivors live healthy lives now. While research for a cure is of the utmost importance, many of us need immediate assistance. Therefore, I founded Social Butterflies Foundation. Social Butterflies Foundation is an organization dedicated to ensuring that lupus survivors know that they are not alone. It provides resource information, opportunities to socialize with others who are living with
lupus, support groups to include one for youth, college scholarships, summit and health fairs, outreach programs, advocacy, and emergency financial assistance. Lupus awareness matters and it is year-round. I am a lupus conqueror, and I plan to continue to reach out to anyone necessary to raise awareness for lupus so lives can be saved because HE is not done with me yet! I have lupus BUT lupus does NOT have me! I pray for that one day this awful disease will have a cure.
Chastity R Corbett
Founder & CEO of Social Butterflies Foundation