In the summer of 2014, right after I graduated with a master’s in Education from NYU, I was diagnosed with chorea-acanthocytosis. It is a very rare genetic neurodegenerative disease. It is a slowly progressive movement disorder that causes involuntary movements of the extremities, mouth and tongue. There are about 500 – 1000 people worldwide that suffer from it. It is like Parkinson’s and Huntington’s Disease. It causes my gait to be unsteady. I have decreased balance, strength, coordination and fine motor control. Sometimes I fall or often bump into objects and need the wall for support. Eating is a challenge. My condition makes it hard for me to communicate. I slur my words, speak softly, and also take extra time to process information and respond to it. Conversation is tough for me and requires patience. Treatment is symptomatic. Research is ongoing and funding is needed!
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