welcome to oneEDSvoice- a positively charged Ehlers Danlos Syndrome community.
- join today!
My name is Arlensiú, it means Promise to Revive, I honor it.
I love art and I love life, I love helping people who need it.
But today I am the one who needs your help to continue living, fighting and helping other people.
All my life I fought I fought against my invisible disease.
But on January 1, 2016, my Illness ceased to be invisible.
I woke up with a rash that left my entire body fuchsia, or you know if it was Zika or a severe allergic reaction. The danger began a few days after having that rash, when I started to have muscle paralysis that has gradually gotten worse and put my life on a tightrope.
All my muscles are affected, many times I can not walk, others I can not cough, talk, swallow and even I can not breathe. Stop digesting solid foods. In addition, tachycardia, fainting, low blood pressure and constipation have become permanent.
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