What if I could show you what’s inside of me, on the outside? I live with an ultra rare condition called Maffucci syndrome, which causes cartilage-based bone tumors to grow all over my body, often in unpredictable and painful ways. These growths don’t just change how I move or how I feel, they shape the literal structure of my skeleton. For most of my life, these tumors have been invisible to others, tucked beneath my skin, only seen on CT scans, MRIs, or X-rays. This wearable art piece is my wa

A few years ago, I saw this same geneticist and she said my muscular symptoms and progressiveness of my disease were disproportionate for the hypermobile subtype of Ehlers-Danlos Syndrome. Since neuromuscular disorders can also cause hypermobility symptoms and mimic connective tissue disorders, she did a neuromuscular panel in addition to a connective tissue panel. Surprisingly, I had a few mutations in the neuromuscular panel — one of which was pathogenic — and none on the connective tissue pan

DIY ring splints: where fashion meets function for hypermobile girlies ✨💍 | A Disabled Icon