My story starts as a scared little kid with weakness on my right side, slurred speech and a droop lip. I didnt know what was wrong with me and felt that I would get in trouble if I told anyone so I did my best to hide it. I basically had symptoms of someone who had a stroke and at 10 years old, this was a very rare and unexplainable event. I had challenges doing simple things like feeding myself since I could not hold anything in my right hand, dressing myself since my right hand was too weak to zip a zipper or button a button. Even playing with my barbie dolls was a challenge. I started to retreat and that’s when my parents noticed something was wrong. I was usually a happy, laughing child who had suddenly become meek and sad. My parents met with my teachers to see if anything was going on at school and between my teacher and parents watching closely, they soon noticed the symptoms.
Off I went to the pediatrician who immediately sent me to a top neurology hospital for tests and diagnosis. It was the scariest time of my life. I remember sitting in the hospital while the technician was putting leeds on my head for an EEG. She yelled at me for twitching which just frightened me more because she didn’t understand I could not control my movements which was why I was there. After a few weeks of testing and being paraded around like a science experiment they told my parents I had St Vitus Dance. The medical term is Sydenham chorea. A condition which is caused by a form of the strep virus that when left untreated interferes with normal function of the brain that controls movement. I had no symptoms of being sick and no sore throat so it wasn’t known that I had the virus in my system. So imagine a 10 year old child who blamed herself for being sick making sense of this condition. I felt I was being punished in some way. I missed a few months of school, wasn’t allowed to go play with friends and basically went from doctor appointment to doctor appointment.
I now know that Sydenham chorea is a rare disorder and when I was diagnosed they told me I was the first reported case from New York in over 30 years. In order to prevent long term complications, the treatment involved getting a shot of bicillin every month for the next 8 years. So like clockwork, I would go see the doctor every month until I turned 18. If I didn’t go for these shots, I would run the risk that the bacteria would have long term affects and possibly damage to my heart valves. As I got older I did more research on this condition to help that scared child in me understand what was going on and to simplify it. Now I can look back and understand how scary this must have been for my parents and my family to go through. My purpose now is to help all of you make sense of your medical care so that fear doesn’t cloud your judgement. To help simplify things to you and your family.