I was diagnosed at 23-years-old with systemic lupus erythematosus (SLE), and shortly thereafter, lupus nephritis. This is my story to being More Than Lupus.
At the time, I had just begun pharmacy school with the hopes of becoming a pharmacist. Lupus, to me, was nothing more than another disease state in a textbook, until one day, when it presented itself as a skin rash on my face. However, it was not the classic malar or “butterfly” rash – it was different. Like many who struggled to discover their lupus, I was mistaken for other diagnoses. First, I was turned away from a Student Health nurse with mupirocin (antibiotic) ointment, then a physician with doxycycline (antibiotic), both with the consensus that I should stop worrying about my acne. When my rash worsened, I was finally referred to a dermatologist who suspected a sun rash due to my history of eczema. Fortunately, I was able to request for a skin biopsy, and the results confirmed discoid lupus (a form of skin lupus). It took roughly 3 months for me to become diagnosed, which is considered extremely fast and fortunate for many lupus warriors.
I walked into my most important final exam – an exam, that if failed, would have held me back another year in my studies – with a fever and a severely painful rash that looked like I had scraped my face on the asphalt (see picture).
The rash had now spread to my ears, hands, and feet. Yet, I was determined to not fail this exam. I performed miraculously well despite the circumstances. But, now what? Now that my head was not thinking about school, I was faced with my diagnosis of lupus. I remembered thinking, “I will have lupus for the rest of my life. What will happen to me? Will this rash go away? Will I be able to finish pharmacy school? How do I explain this to my parents in Vietnamese?” I had so many questions running through my mind.
I visited the rheumatologist for the very first time. We spent an hour talking about a disease that has now captured my life. I wanted to know the worst possible outcomes and all the available treatment options. What if I lose my memory from central nervous system lupus? What happens if I am treated with cyclophosphamide – a chemotherapy agent? At 23, I never thought I would have a discussion with my doctor on how to freeze my eggs in the event of infertility from cyclophosphamide and disease progression. I was incredibly lucky to have met my rheumatologist who truly listened to my concerns and cared about me more than just simply “lupus.” I started hydroxychloroquine (Plaquenil), and my skin rash slowly resolved. One month later, I was diagnosed with Class III lupus nephritis, and that was when things turned for the worse. I was immediately put on high-dose prednisone (steroid), Cellcept (immunosuppressant to protect my kidneys), Bactrim (antibiotic to prevent infection), and losartan (blood pressure-lowering agent). Imagine a pharmacy student studying about medications and then having to take them too. That was my reality, and it still is. Prednisone for me meant a moon face, buffalo hump, weight gain, and constant hunger. I also lost nearly 70% of my hair. You don’t realize how much you lose of yourself until it’s gone. I did not feel like myself for over a year, and what felt worse was not knowing when this would “end” or how my disease would progress 1 year from now or 5 years down the road. I still don’t know the answer to that. Part of me still wonders how many years I have left of this luxury where I am “healthy” and in remission.
I am now 26 and recently graduated with a Doctor of Pharmacy and Master of Business Administration. I share my story with the purpose to help someone feel more hopeful about lupus. Lupus did not stop me from living my life or pursuing my dreams, and it certainly will not for you. Personally, lupus has taught me to become a better healthcare provider (because I know too well what it is like to be a patient) and inspired me to give back to the lupus community as a pharmacist.
As a young Asian American woman, I want to use my voice to raise awareness about this autoimmune disease. Too often, this disease is difficult to understand and can easily be misunderstood, especially when presented with a language barrier. I therefore look forward to being able to bridge a patient’s understanding of their medications to how these will help treat lupus. Because, at the end of the day, we are all More Than Lupus.
Van Anh Vu, PharmD, MBA
Written By:
Van Anh Vu, PharmD, MBA
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