“My name is María, i am almost 23 years old and live near the City of a hundred Steeples, alias Montréal. My journey with atypical Ehlers Danlos Syndrome started as a quick misdiagnosis, Osteogenosis Imperfecta, also called “brittle bone disease”. I was 13 years old when I had my first heel fracture (with minimal contact trauma...). Frankly, icing, warm baths, bandages, taping, crutches and wheelchairs have been of good use (and my best friends). My outlook on life has changed significantly because of my condition, in a good way. Because of the fact that my body is unable to follow my will at times, art has become my antidote and passion. Throughout my adolescence, I discovered my devotion for visual arts, painting, drawing, singing, music and ballet (as physiotherapy for my heels). PE classes being forbidden for me since primary school, jealousy and misunderstanding has been a huge thing in my life (not for me, but for others. The lack of knowledge of my disease has made me an advocate of not only EDS but the commorbid diagnosis too (POTS, MCAs, chronic depression, asthenia, dysmorphophobia, anxiety and others...). Science may not be able to provide me a new body anytime soon, but i’ve learnt to be proud of my stripes and soo should you!” @_luceononuro_
6 comments
klayline4@gmail.com
9/23
https://bit.ly/3IrPU5E
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