During our Health Equity Forum at Week in RARE 2024, Suzanne Edison led a great workshop for writing a letter to your rare disease and crafting a mask that shows the super powers you have to deal with that disease.
Amber Denton wrote this piece and created this mask.
Behind the Scenes (a mask).
Dear NBIA,
You are like a fly always around. Only being a pest when you are right in my face, seeming to never leave. To me, you are like walking through a field of cacti, full of thorns and things you don’t want to get near, scared to make a wrong move. But, looking around there tiny beautiful flowers of all shapes and sizes that seemed un phased at living such a thorny life. You sound like a high school marching band with many different sounds but one melody. You are a trail mix that is filled with many different experiences, emotions, and situations. Navigating the community is like walking through the perfume section of a department store, overwhelming but also intertwined with spots of enjoyment. If I could call you by any other name it would be Monet. Individually it is difficult and often confusing, but together with a community creates a source of beauty.
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