Rare Disease Day


Today is Rare Disease Day.

I battle a rare condition called Ehlers Danlos Syndrome.

Below is art therapy depicting how I feel nearly everyday battling a rare disease that has no cure, and limited insufficient treatment as well as debilitating co-morbidities.

My Body
My Body

My Sanity
My Sanity

This is what it takes to paint a picture; medicine, ring splints, wrist brace, and the occupational therapy foam tool for holding paintbrushes, silverware, toothbrush, and other things of that ilk. Also needed but not pictured; a full support ergonomic chair, a shoulder brace, elbow compression, sometimes a back brace and neck brace, and occupational therapy techniques.
What it takes

P.S. It’s art, I’m not actually bleeding all over the place. The bleeding represents strong areas of pain and the vomiting blood represents screaming bloody murder from the pain. The minor nudity is to express a strong and quite uncomfortable sense of vulnerability. If any of it made you uncomfortable then I know I conveyed at least part of what I was trying too.


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