Alyshia Merchant, Roanoke, VA (All of Us Advisory Team)
I fell suddenly ill in the summer of 2012, at the age of 23. Constant visits to the ER over the course of three months revealed no clue as to what was going on with my body. It was only when I began having serious life-threatening symptoms such as high fevers, vomiting, swelling in her feet and legs, and blackouts, that I was finally hospitalized. After several long days of testing, and a kidney biopsy, in October of 2012, I tested positive for SLE Lupus Nephritis. From that day on, my life was never the same.
The first thing I tried to do, was find support in my community. However, I found absolutely nothing. Despite my treatment plan, lupus remained fully active, and wreaked havoc on my life for a year and a half. lupus had caused me to lose most of my hair, I carried around 40 lbs. of painful edema, or fluid, in my feet and legs, I had skin rashes everywhere, and a swollen round face from the high dosages of steroids prescribed to suppress my immune system. For the first time in my life, I was insecure, and I was alone.
In January of 2014, lupus caused me to go into acute kidney failure. After six long months of chemotherapy, I finally began walking on my path to recovery. I then decided that I never wanted anyone in my community to go through what I went through alone. In 2015, I created the organization, Making Lupus Look Good (MLLG). MLLG is dedicated to empowering women that are suffering silently with the many insecurities that the lupus battle may bring. The MLLG mission is to restore the confidence in these women that lupus has stolen from them, by providing them with a full glam experience including makeovers, wigs for hair loss, skin care, etc, and full photoshoots at no cost to the patient whatsoever. The purpose of the makeovers is to remind these women of the beauty that God has given them, despite the many insecurities that lupus may throw their way. In July of 2015, MLLG partnered with The Lupus Foundation of America DC/MD/VA Chapter, and created the first ever Lupus Awareness Event in Roanoke, Virginia, which we have continued annually ever since. In October of 2017, I became certified as a Chronic Disease Self-Management Workshop Leader, a program created by a group of researchers at Stanford University. With this, I lead workshops in the community, to help others living with Chronic Illnesses learn to better cope with and maintain control over their illnesses. In 2019, I created The Survivor’s Circle, the first lupus support group in my community in over a decade. And in 2020, I became one of thirteen people chosen across the country to be a Team Of Advisors Member for PatientsLikeMe, and I’m beyond excited to now be a part of the All Of Us Research Program, and to do my part in helping to make a change in the world. Since my lupus diagnosis, I have also been diagnosed with Pseudo Tumor Ceribri, a rare neurological condition caused by lupus, that mimics the symptoms of a brain tumor. Although I have learned to better manage my illnesses over the years, I still battle with much pain and insecurities every single day. Which is why my God given passion is to bring as much awareness as I can to lupus and invisible illnesses, and to let lupus warriors across the world know that they aren’t alone in this battle, and that I am fighting with them. It’s my purpose.