Let me make sense of  my story. Growing up in the 80s my mom didn’t work so she and her friends would often gather at my house. I remember coming home from school one day and overhearing a conversation about how drinking water helps you lose weight. Like many families during that time, my family subscribed to the National Geographic magazine and they had a story about the effects of water on the body and a magnified image that almost looked like a bug. This made sense to me! In my mind, water was made up of little bugs that ate the fat in your body and that’s how you lose weight drinking water. This was just the beginning of many ways I would start to simplify how things worked in my own way.

A few years later I had some medical issues of my own. I had weakness on my right side, slurred speech and a droop lip. I had symptoms of someone who had a stroke.  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. My arm would often twitch or just swing on its own. I was scared and tried my best to hide and mask the symptoms as much as I could because I was afraid of getting in trouble. I did my best to make sense of what was going on but I never fully understood it. My parents noticed the symptoms and 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 it 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 actually 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.

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. My purpose now is to help all of you make sense of your medical care so that fear doesn’t cloud your judgement.

Making sense of it all!
Robyn

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