Quenetta W. - Diagnosed at age 30

Hello all, my name is Netta, I was diagnosed with lupus, macrophage activation syndrome (MAS) and hemophagocytic lymphohistiocytosis (HLH) January of 2022, during my second trimester of my third pregnancy. 

My symptoms were similar to Covid. I had night sweats, fatigue, body aches, loss of appetite and my urine was so dark. I kept getting tested for Covid and of course it was negative every time. I was admitted one day for what was said to be a UTI & I was administered fluids and antibiotics, but a day later, my health started to decline. My face began to swell and I thought I was just having an allergic reaction. I was then admitted to labor & delivery for observation because of my blood count. My doctors worked around the clock to figure out what was going on. At this time family and friends were notified. 

Fast forward days later, I woke up with a trachea, feeding tube, IV’s everywhere. Barely recognizable by my loved ones. I went through the most. I cried everyday, mainly because I missed my children and I wanted to get better. I had two biopsies in my face, another for my kidney, and a bone marrow biopsy as well. The therapeutic apheresis was so draining, it made me so weak. 

I kept faith and I talked to God most days. I’m blessed to still be here and walk with every single person whose been affected by lupus. I’m blessed that all that I went through I get to wake up next to my Lupie baby and her big sister. She’s truly my miracle baby. My Ken Ken fought hard, growing inside. Everyday is different for me. I’m still learning and eager to know more about lupus. I am a survivor!