Everything with a Smile: My Diagnosis of Vanishing White Matter Disease
January 29, 2015
Hi everyone my name is Monee Broadnax, I am twenty years old and here is my story! I grew up in the San Francisco Bay Area and I enjoyed my life. I was always the entertainer of the family I like to see people laugh and smile. This is one vivid detail I have from my childhood, I was sitting down watch cartoons and my mom asked me why is my head shaking? Am I cold? I replied I don’t know. I was five at the time and I didn’t know why this was happening but it was. My mom brought it to my doctors attention, she said its nothing I will grow out of it. I never did, years past I was in the fourth grade I was 10 at the time and this is when my doctor grew concerned because she noticed my tremors were worsening to where my hands and legs were shaking as well. I was concerned too and this is when my doctor started recommending I see a neurologist.
I went through multiple testing and no answers. My first neurologist just ruled it as Cerebral Ataxia. When I turned 13 and things progressed even more, my doctor recommended another neurologist, Dr. Malhothra. We tried him out and one thing I enjoyed about him was that he was willing to listen and he did most of the leg work of ruling out conditions. He also recommended a medication to decrease my tremors, It worked for a minute, my tremors weren’t excessive like they would usually be. Fast forward to when I turn 14. While school was going well for me, the next year my writing capability was disintegrating. No one could read a word I wrote and my hand writing was completely illegible.
Fast forward again to 15, I’m in high school and I decide to get off my medication, as its not working anymore. My body has become immune to it. A month later I began experiencing symptoms of Dystonia and spasms in my back. I cannot be in PE any longer and its the start of January 2011 and my doctor sees me and he has seen a huge change in my health. He tells me our last resort which is a brain biopsy. I agree to it without hesitation. I know most girls worry about losing a chunk of there hair but I wasn’t. I wanted answers. My surgery was scheduled for March 22, 2011 a week after I turned 16. Surgery went well, finally the end to our waiting game!
Four months past and its July. My mom gets a phone call from my neurologist and he tells her we have a diagnosis. Vanishing White Matter Disease. Since the day when I was told I have a life threatening disease, I have learned to accept that and continue on with my life. I owe everything to Jehovah God though because without him I would’t have gotten an answer. I prayed for an answer and I have gotten it. Right now I am currently not in school, I am taking a year off to pursue my spiritual goals and do some reflection. I realize that everyone I come into contact with alway tells me that I am always smiling despite my situation. I think this is just who I am, someone who always loves to smie.
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