Next Scottish group meeting Guide dogs for the Blind

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Elizabeth Mair
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Next Scottish group meeting Guide dogs for the Blind

Postby Elizabeth Mair » Sun 08 Nov 2009 4:45 pm

We meet on the 28th November at Strathclyde University Chaplaincy Centre, John Street, Glasgow (Near George Square/ Queen Street station)
Our speaker is Pamela Munro who will tell us about the criteria for getting a Guide dog.Gillian Bosten a group meember will also share the interview that she did for Insight radio.
Looking forward to seeing you there. You are welcome to bring friends or family with you. It is an opportunity to share stories/experiences and learn more from our speakers. Elizabeth Mair

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Re: Next Scottish group meeting Guide dogs for the Blind

Postby John Smith » Mon 09 Nov 2009 11:01 pm

Thanks, Elizabeth.

I've updated the event page - which has a map for those who don't know where to go!
John

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Re: Next Scottish group meeting Guide dogs for the Blind

Postby magictime » Tue 10 Nov 2009 7:57 am

Hi

I'd just like to raise a concern about mixed messages on this website that might be confusing and frightening for some KC sufferers, especially those who are newly diagnosed. Someone coming to this website for the first time and starting with the "What is Kerataconus?" info page is told explicitly that "the condition does not cause blindness". If they then click on "General Discussion Forum", one of the first posts they see is about getting a Guide Dog! And once they start reading through some discussions, they'll find people talking about being registered blind etc.

I wonder if that info page should be revised to be a bit more upfront about worst-case scenarios? I know there's a balance to be struck and you don't want to scare people silly, but as I say, these "mixed messages" seem scary enough already.

Magictime

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Re: Next Scottish group meeting Guide dogs for the Blind

Postby Andrew MacLean » Tue 10 Nov 2009 9:05 am

Magictime

I agree with you about misleading messages, but in this case it seems that both statements seem to contain truth. some people with keratoconus have sight that is so poor that they are legally blind: I was. People with keratoconus that has led to 'corneal blindness' can qualify for a guide dog.

On the other hand, because keratoconus is a condition that affects the front of the eye, the retina works perfectly well, so that even if legally blind the person with keratoconus can 'see' light and shade.

Maybe we need another word to describe legal blindness, but for now we are stuck with the vocabulary that has come to us.

All the best

Andrew
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Re: Next Scottish group meeting Guide dogs for the Blind

Postby magictime » Tue 10 Nov 2009 10:13 am

Andrew - I appreciate that there's an ambiguity in the word 'blind' (totally blind vs. legally blind), but surely that's all the more reason to be 100% clear about the sense it's being used in.

And surely when you say "KC does not cause blindness" *without* disambiguating the term, any sane person is going to think you're talking about *legal* blindness - the sort of blindness that goes along with being registered blind, needing a guide dog, using a white stick, relying on talking books and newspapers etc.

Surely there's a simple enough solution - if you mean KC doesn't cause total blindness, say "KC doesn't cause total blindness".

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Re: Next Scottish group meeting Guide dogs for the Blind

Postby Andrew MacLean » Tue 10 Nov 2009 10:59 am

As I say, I agree with you. I think that the article to which you refer is too stark in the unsupportable assertion that keratoconus cannot lead to blindness: it can. A couple of people in the Scottish Group are registered blind, as was I.

Maybe, if they are reading this, somebody who is able to edit that area will add the word "totally", or even delete the article. I'm afraid that my 'access all areas' pass doesn't let me do that.

All the best.

Andrew
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Re: Next Scottish group meeting Guide dogs for the Blind

Postby John Smith » Tue 10 Nov 2009 12:39 pm

I'll try and get this edited when I get home.
John

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Re: Next Scottish group meeting Guide dogs for the Blind

Postby Anne Klepacz » Tue 10 Nov 2009 8:58 pm

Magictime - you raise a concern that we've debated many times over the years. How do we create a place that is informative and supportive both for people just diagnosed with KC and for people who are going through a bad time with their KC? There's such a huge variety in people's experience of the condition. And that's even more true now, when sophisticated instruments mean that more people are diagnosed with what's called 'subclinical' KC - that is KC so mild that they were often unaware there was any problem until they went to a laser clinic to correct their shortsightedness and were turned away because it turned out they had this condition. Many of those will probably get good vision in spectacles for the rest of their lives. And even for people who progress to needing contact lenses, many find that their KC eventually stabilises. So although it can be a nuisance at times, it really doesn't have that much impact on their day to day lives.
It's only about 1 in 10 of people with KC who will ever get to the stage of needing a corneal transplant. And even for that minority, some will have one good eye with little or no KC and will manage reasonably well even though the other eye has little useful vision before the transplant. So people who might qualify to be registered as partially sighted or blind would be the even smaller minority who have advanced KC in both eyes and reach the stage when contact lenses no longer adequately correct the vision or they become intolerant to their lenses. Even then, consultants generally seem to be very unwilling to register people with KC as partially sighted or blind - probably because they see it as a temporary state. That's not very helpful to us, because some of us would probably benefit from the help that becomes available with registration during the time when we are waiting for the transplant and then waiting for it to settle down and give us good corrected vision again. But that's another story!
So that's the context of the 'mixed messages'. As we keep saying here, KC is different for each individual. For lots of people, it isn't really a big deal (but, as we also keep saying, those are the people who never post here!) For others, life's OK most of the time until there's some crisis like an abrasion or an infection or hydrops and not being able to wear a lens brings huge limitations for a few weeks or even months. With a much wider range of contact lenses, and developments in other options (Intacs, crosslinking, partial and full transplants) hopefully fewer and fewer people will go through bad times. But of course, posts on this forum are very often about the bad times. Where else are people going to find others who understand what it's like and get support? But it does mean that someone newly diagnosed browsing this forum might get a very skewed idea of what KC is likely to mean for them.
So getting the balance right isn't easy! As you say, we don't want to scare people silly, neither do we want to suggest that KC can't be very difficult if it progresses rapidly.
The description of KC on the home page is a brief summary taken from the basic information booklet about KC written for us by a senior hospital optometrist. She is currently revising and updating that booklet so this might be a good opportunity to look again at our definition on the website and see whether we can get a better balance for all our readers!
Anne

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Re: Next Scottish group meeting Guide dogs for the Blind

Postby magictime » Wed 11 Nov 2009 9:02 am

Thanks everyone - I do appreciate the awkward position you're in. I suppose my view on how to strike the balance would be: just be equally upfront about what the worst-case scenarios are, and about how rare they are. You already do this in relation to corneal transplants, spelling out the percentage of people who get to that stage, but (as I say) the position on vision loss seems much less clear. Tell someone there's only a very small chance they'll end up legally blind and they might be reassured; tell them they definitely won't go blind, but might need a guide dog, and they could end up needlessly worried and confused.

Anyway, obviously I don't need to labour the point. Thanks again for your responses and very best wishes.

Magictime

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Re: Next Scottish group meeting Guide dogs for the Blind

Postby Elizabeth Mair » Wed 11 Nov 2009 4:12 pm

I'm surprised that announcing the next Scottish group meeting has raised so many issues.As a Scottish group we cater for the needs of all our members as far as possible including thsoe who are quite visually impaired. One member is in the process of getting a guide dog and another has tried to get one. Our main speaker is actually an optometrist so she will be discussing a lot more than guide dog criteria.We choose speakers depending on what the group wants.
At group meetings there is is a lot more than just listening to the speaker. Meeting and sharing with other members is equally important.
I hope that people living reasonably near to Glasgow will still be encouraged to come to the next meeting Elizabeth


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