Alexander's Lucodisraphy

Queen_K

Hello all

I am 30 year old and I have a rare condition called Alexander's Lucodisraphy.

zaddy123

Oh , how does the condition effect your life?

Jimm_Alumni

I haven't actually ever met anyone with is @Queen_K, could you tell us a bit about it if that's alright?

Queen_K

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.

Rachel_Scope

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 https://alextlc.org/#:~:text=We%20are%20Alex%2C%20The%20Leukodystrophy%20Charity%20(Alex%20TLC)&text=There%20are%20more%20than%20100,for%20all%20those%20with%20leukodystrophy. .

Queen_K

@Rachel_Scope

https://forum.scope.org.uk/discussion/comment/901537#Comment_901537

Can you tell me more please. What do you mean when you say support?

Rachel_Scope

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.

Queen_K

Yes I do.