you tube.

[Elizabeth R]

people on you tube just said i have KC and i am going blind .and tv shows.very odd.i just hope their Moore info out

[harker]

It's awkward, on the one hand I think Space Cadet's experience is so statistically unlikely (she had, off the top of my head: a very late diagnosis due to poor care, contact lens intolerance, and a failed graft) that reading about what happened to her isn't very useful to someone who's just been diagnosed. In fact, it could be counter-productive by causing them to panic.

On the other hand, it did happen to her. And it seems unfair to expect her not to share that experience when someone asks.

SC - does a failed graft not qualify as a source of blindness in itself? And what's the point of registering legally blind if they quibble over your condition anyway?

[space_cadet]

the clarificiation of deemiing me lb was primarily for when I was doing my undergraduate degree to get Leeds Met to put support in place which they kept promising and didnt follow through with , but knew if they denied with a recognised disability they would face a law suit.

[Andrew MacLean]

Righto

I'm smiling, not frowning as I type this.

1 Elizabeth R watched my videos about KC on YouTube. Thank you Elizabeth! I talk about the risk of blindness (a risk of which I was told when I saw the ophthalmologist at Aberdeen Eye Infirmary who then said 'When you go blind we will punch out your discs and give you new ones from a dead person). I have posted about this before but the post is now so deeply buried in the nether regions of the forum that it is probably unfindable. Elizabeth posted a perfectly innocent question in a new string that had almost the same name as the string in which I drew attention to my YouTube videos.

@Elizabeth R, we all recognise that you posted a legitimate question and nobody thinks you were wrong to ask.

2 Chris responded to Elizabeth's question with the answer to another question, "Can you lose all visual perception through KC". I have a friend who has no optic nerve. His eyes work better than mine do but there is nothing connecting his functioning eyes to the visual cortex of his brain. He has no visual perception at all. He sees no light and he sees no dark, any more than I can see either light or dark out of the back of my head.

Chris's answer was honest but was not an answer to Elizabeth R's question. I might have felt a bit piqued at the way he answered as, on one reading, he may have been questioning my veracity in saying that I had gone blind through KC. I did not feel piqued; but I can easily understand why Lea did. She was right; those who suffer from outcomes at the extreme end of the spectrum do not feel supported when, on a forum like this, people seem to diminish our experience.

3 I tried to say to Elizabeth that she need not worry too much about the risk to her useful sight. This is a rare, but not unknown, outcome and even if sight does fail (with the arrival of what I have seen described as 'corneal blindness') there is still a range of possible therapies that can restore what has been lost. My own story makes that point amply: I decided not to accept surgery when it was first offered. When I thought I had nothing left to lose I decided to accept the repeated offer of first one, and then two, transplants.

I am sorry that, in a forum like this, we don't always seem able to manage to get alongside each other. For the avoidance of doubt let me say that I have the utmost respect for Chris and for Lea. Elizabeth R, you were right to ask the question; I'm sorry that the answer couldn't be more straight forward.

I am still smiling. Those who were my friends at the beginning of this post are still my friends at the end of it.

Every good wish, and thank you for a lively discussion.

Andrew