What does still alive mean?
I have a very rate genetic deffect called Adrenoleukodystrophy. It’s not easy to explain. So I’m linking to a video:
In the beginning of my 30’s I developed the adult cerebral type. I had very tiny symptoms from X-ALD affecting running. I got a stem cell transplant right away, with very little side effects at first. A couple of months later unfortunately I got chronic graft-versus-host-disease. I had a lot of treatments including experimental ones.
How did you get blind?
Due to graft-versus-host disease I got cataract in both eyes accompanied with bleeding and infections. After lots of treatments agsinst graft-versus-host and my eye bleedings and infections I finally got graft-versus-host under control after two years. By then my visions collapsed to 15 degrees and 40% to 60% vision on both eyes. Some more bleedings and infections later I’m left with less than two degrees field of view on both eyes. My right eye has less then two percent vision left. On the right eye I have 10% to 20% left. I learned a lot since then. I had to learn braille, using a screenreader and I am a white cane user. For work I’m trying a different way so I can still handle graphics at work.
What do you see?