rare disease has taught me to live one day at a time

Raquel Morales

My life changed a few months ago when I heard doctors tell me they had a diagnosis for every weird and unexplained symptom I’ve had in the last 6 months. At some point I felt like I went crazy, because I felt so exhausted, constant headaches, unexplained nausea, some skin rash that was really bothersome, unexplained pain in my shoulders, what else can I say that you didn’t know? Hearing the phrase “Optic Neuromyelitis” for the first time was a shock, it was disturbing, incomprehensible, a rare disease that since those days has been part of me. Struggling with this disease is not the worst of this situation, unfortunately for me, at my country don’t exist any profesional attendance for any disease, I was wondering if out of this country we can find hope, to have a better life, to improve our quality life, and this is the reason because I am looking to hear more experiences and know what things were helpful for all the people who is fighting with this disease. Thank you for reading me and share with me a little of hope in all this darkness of ignorance. 

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