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Hi! I’m Elaine,

A geneticist diagnosed with an ultra rare disease.

During the Covid Pandemic I had a Dilemma, I could spend Christmas night alone or I can fly back home to Salt Lake City and be with my family for the holidays. I was more afraid of being alone during the holidays than catching covid so I decided to fly back home. Spent the night at a good friends house and shortly after one day I woke up having a seizure. At this very moment I knew my life was going to change but I also knew I was not going to die from it. It was a blessing to have been home with family that took great care of me and supported me through this hard time. 

Long story short I went to the hospital and they assumed from the images it was glioblastoma (GBM) multi form. Which has a median survival rate of 18 months. Interestingly my PHD work was on these tumors. So I knew what I would be facing, and in the 30 years of my PHD work there hasn't been much progress on tumor treatment. My pathologist called me and said "There is no tumors, unfortunately its CNS Vasculitis", which is a very rare form of disease. 

Only two months later I've loss movement on my whole left side of my body so my mobility was taking from me in a instant. I started daily chemo for 6 months, and started treatment for monoclonal antibody. I have had two MRI's that show its no longer progressing and slightly receding. At the moment I'm in remission continuing physical therapy and the monoclonal antibody treatment therapy. Scroll through the blogs to read up on my story in detail. Any questions please feel free to reach out.