TESTIMONIALS - Kisha M. Davis, diagnosed in 2011

My experience with Lupus may have started two years ago or prior. The summer of 2011, I went to my dermatologist due to swelling and a heap of small bumps on my face. It was diagnosed as “rosacea” but what was also prefaced was that “rosacea” commonly affects older Caucasian women, not African- Americans. In my mind, this sent up a red flag, however the hydrocortisone that was prescribed did treat it and the issue never resurfaced…on my face. Over the next year, I did have similar rashes to develop on my chest and thighs. I used the remaining prescription and did not consult with the dermatologist at that point.

What initiated my re-visit to the dermatologist in November 2012 was an area of hair loss on my scalp. My beautician had noticed it several months prior and I attributed it to being stress-related or chemical-related from relaxers. Ironically, I probably was under less stress than at any other point and had developed a healthy lifestyle including daily physical activity and Zumba. The area became more apparent, due to more hair loss, but even greater there was scarring to develop. The scarring became flesh toned; similar to the inside of my palm. This alarmed me and I scheduled another visit with the dermatologist. Before my visit with the dermatologist, I conducted my own research on hair loss in African American women and Alopecia which I thought to be the source of my issue. Upon my research, I learned about at least six different types of Alopecia, one of those was related to Lupus. I totally ruled it out.

On November 20, 2012 I went back to the dermatologist for my appointment. I went in feeling informed about what the possible diagnosis would be and even what the potential treatments would include. When she looked at the area in my head, the first thing she mentioned was that she typically sees this type of hair loss and scarring in women with Lupus, but a biopsy would be necessary to accurately determine. Again, I knew this was not an option; I was feeling great and taking care of myself more so than any other point in my life. So, she took a biopsy which required numbing of my scalp and then she removed tissue to be sent for testing. Again, I knew this was procedural due to my research. I was given a prescription for Clobetasol and advised to begin treating. She also informed me that she would review my biopsy results at my next scheduled appointment December 4, 2012.

My mother went with me to the appointment on December 4, 2012. When the doctor entered with her nurse, they both seemed to have very gloomy dispositions. She advised me that my results had come back and the diagnosis was Lupus. I was in total shock, I started crying and my Mom tried to console me, but we both knew this was the diagnosis we did not want. I asked her a few questions, about medications, lifestyle changes, having more children and what to expect. Her response was for me to “continue doing what you’re doing. Continue with the treatment and advise me of changes as they occur.” She did not deem the need to refer me to a Rheumatologist because she specified that my lupus was Discoid, which only affects the skin which is the largest organ. She also advised me that 90% of Discoid lupus cases do not also develop Systemic Lupus. To rule out Systemic lupus, she sent me directly to the lab for blood testing and advised that the results should be available in a couple days. She would have her nurse call me with the results.

Again, I left her office thinking the worse, but prayerful that my situation was manageable and could be much worse. The chances of me having the “Lupus” that I was familiar with which was debilitating and life-threatening; was not going to impact me. 90% was highly in my favor and I would only need to be concerned with skin issues and learning how to prevent them. On December 6, 2012 before leaving for school I received a phone call that changed my life forever. The dermatologist called, not her nurse. She advised me that my test results came back positive for ANA levels which determined that I also have Systemic Lupus. I did not hear anything beyond that. I had researched System Lupus Erythematosus since my previous visit. I knew that this was the worst case scenario. I knew that my life going to change for the worse. I knew that what had become my life was going to change. I knew people would look at me and treat me differently. I feared how this would affect me being a single mother and taking care of my child. So many thoughts took over and I gradually fell into a self-diagnosed depression. I became withdrawn and those things that normally created joy and happiness for me...did not. I was in a long-distance relationship and after sharing my diagnosis with my boyfriend at the time, he deserted me. He said “I don’t have it in me to give you what you need.” I was losing self-esteem because I felt my hair loss was becoming more noticeable. I started experiencing extreme fatigue and really wanted nothing more than to be by myself and not deal with the world outside my house.  READ MORE....