I HAVE LUPUS AND I'M WALKING TO END LUPUS. JOIN ME?
After being diagnosed with lupus in 2016 with other autoimmune disorders following, I have committed myself to joining forces with inspiring lupus warriors to be a leader in the fight to end lupus. This is my sixth Walk to End Lupus Now as a team captain, in addition to being trained as a Community Ambassador and being a member of the Young Leadership Committee. With your help, Brittany's Wolf Pack has raised thousands of dollars to bring lupus to the forefront of researchers' and policy-makers' minds. Let's make this year the best year yet!
After having many unusual joint pains as a child, I was told I have the genetic marker HLA-B27, which commonly codes for Ankylosing Spondylitis and many different autoimmune disorders. In the field of rheumatology, there are many unknowns, and it is typically a long and frustrating process to reach a solution for proper treatment. Regardless, I continued on to play many sports throughout my childhood and became a highly recruited and competitive volleyball player. Due to a devastating knee injury where I required complete reconstruction of many ligaments, and a development of a septic infection post operatively as a complication of undiagnosed lupus, this dream soon took a turn for the worst. I am truly blessed to have both my leg and my life at this point today. After seven invasive knee operations within three years, my knee had significant cartilage damage and degenerative changes. I underwent an autologous stem cell procedure performed from my own bone marrow to control my pain to avoid a knee replacement for a while, but in June 2017 I received my first total knee replacement surgery at 23 years old. My faith has been a huge key for me in getting through these different obstacles I have had in life thus far and has inspired me to pursue my MPH degree. I currently have the privilege of working at a world-renowned pharmaceutical company, with the desire to partner with patients through their medical journey and be the voice for those who are unheard.
After the aforementioned infection, I developed many unusual immune responses, such as full body rashes and unusual swelling. Initially, it was thought to be an allergic reaction to one of the many intense oral or intravenous antibiotics I have been on, or possibly just a strange response to my body trying to destroy the infection. However, we went on to think it was simply a mystery and allowed it to subside once my body recovered from the intense therapies. During my senior year of college, I have noticed strange lesions developing again on my scalp, in addition to noticing more joint pain, similarly to when I was younger. Being a pre-med/physiology major in my undergraduate years, I finally connected the dots from what I endured throughout my childhood and my genetic susceptibility to autoimmune disorders. It became very unpredictable what my day was going to be like, because some days I would be extremely fatigued for no particular reason, feeling like I'm dragging my body to classes with 100lb weights strapped to my ankles. Or, I would have cognitive dysfunction or GI issues. Other days, I would have intense and throbbing aches in random joints throughout my body. I would even have numb extremities and muscles that are extremely sensitive to the touch and would experience intense chest pain and heart palpitations. At times, the skin on my scalp burned and I became very self-conscious of the skin-lesions, so I finally sought out help from a rheumatologist.
After waiting for my lab tests to come back, I tested positive for ANA, antibodies against my double-stranded DNA, and antibodies against my ribonucleic proteins. Together, this indicates lupus within an individual in addition to the various physical symptoms. As my career is beginning to take off, I want to do as much as I can lead a full and active life. After going through the previous traumatic experience throughout my college years, I wanted to make this diagnosis as easy a transition as possible. I immediately took charge of my health holistically and I was prescribed a medication that has aided in decreasing the progression of the disease and lowering my auto-antibody levels, for it can unfortunately affect any vital organ system at any time in the body. Following further joint pain and an ankylosing spondylitis diagnosis in 2017, I more recently started taking self-injecting biologics for inflammatory degeneration in my lumbar spine and SI joints, which helps my lupus joint pain as well. Unfortunately, I was also recently required to be prescribed Imuran as further symptoms came up, which is an immunosuppressant that puts me at a high susceptibility for infection. Further research is critical for safer and more effective medications that take away lupus patients' fear of the future.
As I continue to pursue my personal and career goals, I do not want this disease to hold me back. I want to be as involved as I possibly can in the fight to end lupus and arthritis through my advocacy efforts and my public health career, not only for my future health and well-being, but the future health of so many other individuals around the world that may be weighed down by the unpredictability of this condition. I've been blessed with a platform that can make change, and I must utilize it in order to help those who may not have the ability to have a voice, walk, and advocate for this disease. Currently, there is no cure, but by donating and supporting research projects, one day there may be a cure for us. Please help me and the Lupus Foundation of America to make strides in the Walk to End Lupus Now!