The red girl
I was born in 1948, anyone could see my big birthmark covering 3/4 of my face, parts of my chest and neck. My father claimed I had to be protected from prejudiced and mean remarks while my mother said I would have to meet the World and believe in myself. She built my self estei was convinced I had it....until she died at the age of 65. I was 43 and realized I was still a teenager dependant on her support! It took me 2 years to come through my grief and mourning.
I got my diagnosis, SWS, when I was 32, after having some strange seizures - my right side felt numb, sometimes only my hand and/or arm felt like they were twisted and I would feel very week electrical sensations, sometimes it moved up and down my body, sometimes I had these sensations inside of my mouth and face. That was a very unpleasant experience and made feel like crying, which I did!
I was examined by a neurologist who told me that my birthmark, glaucoma (left eye) and the epilepsy (the funny seizures) were symtoms of a rare condition, Sturge Weber Syndrome. Today I have a beautiful fake eye (the original one looked horrible!), I´m on antiepileptical medication (my stomach doesn´t like it, my shorttime memory is affected and my spatial abilites (maths and everything technical - computers, mobile phones and what have you) need more support from my loving family. But....Life is good!
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