The story of EYH
Hello! I am Evi from Greece and I live in Athens!
I am a pedagogue-animator for children. I am 31 years old and I am also a patient with a rare difficult disease-autoimmune Behcet! Î’esides this I have also myasthenia gravis, hashimoto, and mast cell activation .
It is difficult to live with 4 autoimmune that one affects the other! From a young age I had some indications that something wrong happened but without any serious manifestation of autoimmune! Shortly before my 27 years in 2017 when I was living my best moments personally, professionally a serious inflammation appeared suddenly in my left eye . this inflammation led to blindness for a short time! I started to lose my sight I went to the hospital and there it all started! examinations, doctors, treatments, drugs , many drugs, After my first MRI the doctors were afraid of multiple sclerosis! 10 days in the hospital after many examinations, biopsies, punctures while I lost my sight in the left eye and started reducing my vision at the right eye the diagnosis was systemic inflammation. This meant that I had to go from the neurology department to a rheumatology clinic. I visited many rheumatologists in Greece, and contacted also many others abroad, some of them did not know, others did not take responsibility for the diagnosis and treatments. So the disease was progressing aggressively beyond the eye and all over the body with rashes, sores, dermatitis, I suffered from pain, weakness and fatigue! the worst thing was that due to the activation of mast cells I have many allergies to many drugs, treatments and cortisone so our weapons were very limited ! after a long time and battles in 2019 comes the diagnosis Adamantiadis-Behcet autoimmune vasculitis that damages the vessels of the body! SoI began the struggle to find the right treatment according to the diagnosis! many drugs, failed treatments, painful biopsies that exhausted my body my psychology! in 2020 my right eye vision deteriored a lot and the condition is irreversible. Myasthenia gravis also appeared dropping my eyelid, having weakness in the extremities and low oxygen! Other treatments were added too !Till today I have had some surgeries and many different treatments hoping that some medicine will suit me and something will go better! I have my family next to me, people who support me and my wonderful doctors .Thanks to them I keep working, trying and continuing !! Life can suddenly change from one moment to the next! We do not know what life has in store for us either positively or negatively! nothing it’s not a given! I feel lucky to live, breathe and I can still dream!