Saturday, 29 February 2020

#EDS4IRE Rare Disease Day 2020


šŸ§” I’m supporting Rare Disease Day for all my sisters and brothers worldwide who have the rarer forms of Ehlers-Danlos Syndrome. 

šŸ§” I’m supporting Rare Disease Day for my baby bump, who will be born in to a country that does not facilitate basic healthcare needs for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders.

šŸ§” I’m supporting Rare Disease Day for all those who are yet to be diagnosed with EDS, HSD or other conditions. It took me YEARS to officially receive my zebra stripes, and that’s all too common in our community -especially in Ireland where we have no appointed consultant. We are more than hypermobile joints and dislocations, these are complex conditions that effect the whole body and can seem so random. 

šŸ§” I’m supporting Rare Disease Day because we need expert medical specialists who understand this, and we need early diagnoses and intervention. 


Today I choose to be a unicorn, because every other day I’m a zebra and go unseen by doctors in Ireland. Today I choose to be heard and shout for others #EDS4IRE #ZebraStrong #ZebraArmy #RarelyDiagnosed #HealthcareNotAirfare


Sign the #EDS4IRE petition and get involved at www.eds4ire.ie

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