Colibri à Rayures
“Il colibrì à rayures” is an association that, through its work, aims to inform and raise awareness about the existence of the extremely rare Ehlers-Danlos syndrome. The choice of the name “Colibrì” is based on a legend that tells a story full of profound meaning for us all.
One day, there was a huge fire in the forest. All the animals were terrified and watched helplessly as it unfolded before their eyes, powerless to do anything. Only the little hummingbird was busy catching drops of water in its tiny beak and throwing them into the fire. The armadillo, annoyed by all this excitement, said, “Hummingbird, you’re crazy! These drops of water won’t put out the fire,” and the hummingbird replied, “I know, but I’m doing my part.” Small as we are, if we all flapped our wings so hard together, we could move even the greatest mountains.
The Rayures represent the braids of the zebra, the animal symbolizing orphan diseases. Hence the name “hummingbird with rayures.”
What is Ehlers-Danlos syndrome? It is a genetic disorder, an abnormality of the connective tissue (the cement of the skin) that affects all organs, including muscles, bones, joints, and, unfortunately, the list goes on. This results in dislocations and subluxations, severe fatigue, tachycardia, and, above all, severe pain. Some affected people are wheelchair-bound, others must wear orthoses. It is still considered a rare disease today.
