Alexander's Lucodisraphy

Hello all
I am 30 year old and I have a rare condition called Alexander's Lucodisraphy.
Comments
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Oh , how does the condition effect your life?
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I haven't actually ever met anyone with is @Queen_K, could you tell us a bit about it if that's alright?
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I was told by mum that I was diagnosed at the age of 22 months old with Alexandra’s lucodydystrophy which is a degenerative condition but thankfully I’ve beaten the odds and it’s left me unable to walk, with weak legs. I was walking until I fell ill.
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Hi @Queen_K. It's not a condition I had heard of either. Do you have support around you? You may already know about it but I found this organisation for people with your condition .
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Can you tell me more please. What do you mean when you say support?
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Hi @Queen_K. I meant do you have anyone around you to help you with things around the house you struggle with, or emotional support.
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Yes I do.
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