On July 5, 2005, my life drastically changed. I was diagnosed with Lupus at age 32. It was an unexpected blow that left me feeling sad, hurt and overwhelmed with questions. It all started when 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 a dermatologist, so I went to see Dr. Frederick Quarles of Hampton, Virginia. He suspected I had Discoid Lupus (which mainly affects the skin) and ordered a skin biopsy. Discoid Lupus mainly affects the skin. I had no idea what Lupus was, but I had heard the word before. Like most people would do, I quickly searched the Internet and was startled by what I learned. A lot of people have died from Lupus complications. When I was called in for my biopsy results, they revealed that I did in fact have Lupus. My heart dropped, and it was as if someone knocked the breath out of me. I was given a lot of information and instructions on what I could and couldn’t do. The thoughts 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 woman who enjoyed playing basketball and baseball with my three young sons. I enjoyed going to the beach. I had just earned my Master’s degree, and I 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 diagnosed 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 with pneumonia and a pulmonary embolism. The doctors finally made the determination that I did not have Discoid Lupus, but rather Systemic Lupus (SLE), which affects the entire body and not just the skin. SLE most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys and nervous system. It is unpredictable and can be fatal.
My condition had progressed quickly and severely.
I was in and out of the hospitals and nursing homes for the first half of 2006 and many times thereafter. I suffered from pneumonia, pulmonary embolism, a mild stroke, meningitis, epilepsy and so many other afflictions related to Lupus, but here I stand. As part of my Lupus treatment I had to go through chemotherapy (usually reserved for treating cancer) for six months in 2012, and I just finished another six months of chemotherapy in March 2015. Chemotherapy suppresses activity of the immune system, which goes somewhat haywire in people with Lupus.
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 if you have faith. My faith in God has kept me strong and I believe that things happen to you for a reason. It is how you allow them to affect you that determines the outcome. My challenges with Lupus have made me stronger in many ways. I have spent the past 10 years fighting to raise awareness about Lupus and sharing my experiences to help other patients. Speaking out about Lupus and educating people is essential. Lupus is so misunderstood and often misdiagnosed because it disguises itself as so many other things, which causes many otherwise preventable deaths.
I have met so many Lupus patients who did not talk about their illness because they were ashamed or felt alone. My goal is to motivate and encourage 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 it 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 don’t “look sick” they often feel alone and isolated.
For the past 10 years I have worked with the Lupus Foundation of America’s DC/MD/VA Chapter to bring their Walk to End Lupus Now to the Hampton Roads community. Last year, Hampton Roads residents were able to participate in the first nationally recognized Walk to End Lupus Now in our area. We raised over $48,000 for our first Walk to provide necessary resources and emergency assistance to Lupus patients in Hampton Roads.
This year’s Walk to End Lupus Now will be on June 25, 2016 at John B. Todd Stadium in Newport News. We are proud to have Evelyn Braxton, the mother of Grammy Award winner and Lupus survivor Toni Braxton, as our Grand Marshal. Lupus awareness matters.
I am a Lupus conqueror, and I will to continue to reach out to anyone who will listen to raise awareness so lives can be saved. That’s why I chose to share my story. I have Lupus but Lupus does not have me.
