The BMA's view!

General forum for the UK Keratoconus and self-help group members.

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jayboi2005
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Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Cheshire

Postby jayboi2005 » Fri 24 Mar 2006 4:08 pm

WOW im glad i found this place before that book! :D
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Andrew MacLean
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Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Postby Andrew MacLean » Fri 24 Mar 2006 4:38 pm

Ken G

You made me smile with that quote from the BMA. so they are not the font of all wisdom after all. Now who does that leave? ... ... ... ?

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Andrew
Andrew MacLean
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Ken G
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Postby Ken G » Fri 24 Mar 2006 4:45 pm

Andrew

Well indeed!

Now I was once in the back of this London cab...
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Susan Mason
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Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Bolton Lancashire

Postby Susan Mason » Fri 24 Mar 2006 4:52 pm

This does seem a rather silly quote.

I know of no one else in my family who has KC and the more you think about it, it is just a horror story which would frighten the life out of you at diagnosis, something I feel we can all do without.

Susan

PS I am sure many of the medical professionals will feel uncomfortable with what is in the book
don't let the people that mean nothing to you get you down, because in the end they are worth nothing to you, they are just your obstacles in life to trip you up!
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GarethB
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Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Fri 24 Mar 2006 6:39 pm

Certainly the professionals that know about KC.

I know when I have seen a new GP when moving house and even when I had my operation earlier in the year i mentioned KC and the grafts and then had to explain KC. mind you the doctor doing my op specialised in the digestive system so much rather he knew that side of things rather than KC.

Same goes for my KC doc, he can be blisfully unaware of how the digetive system for all I care, as long as he keeps doing hist stuff to help me and my KC.
Gareth
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mattsaze
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Postby mattsaze » Fri 24 Mar 2006 6:59 pm

Yeah, I know Dr Mike Peters and will mention this to him.

My new GP also didn't know about KC and had to look it up! At least he made the effort to find out about it!!
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mattsaze
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Postby mattsaze » Fri 24 Mar 2006 7:04 pm

Also... Would would anyone like to suggest an alternative entry that he could possibly approve? Maybe something from this site.

ps I am a trekkie and eat cake too

KC - so much to answer for!!
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GarethB
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Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Fri 24 Mar 2006 7:47 pm

Based on my preveous description taken in part from John Dart's presentation at last years confrence and the way it was used by another board member I think I should stay quiet :D
Gareth
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Alison Fisher
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Joined: Sat 18 Mar 2006 12:56 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles
Location: Leicester

Postby Alison Fisher » Fri 24 Mar 2006 8:18 pm

Another cake and chocolate eating Trekkie here (quite partial to Stargate as well). :D

That was the sort of info I was given twenty odd years ago when I was first diagnosed, and actually is pretty accurate in what happened to me. Little wonder I've been so worried about my daughters eh? :roll:
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Prue B
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Postby Prue B » Fri 24 Mar 2006 10:14 pm

Pretty much me too, but a transplamt is not a permanent cure. I wish. There are still issues post transplant and the KC can still continue at some point. By saying a transplant is a cure it takes away the valid reasons to wait until a transplant is warranted. Why go through the glasses and RPGs just have a transplant on diagnosis.
I was told by the orthoptist at my opthalmologists that my accuity was about 3 or 4 lines better than it should have been according to the lenses in my glasses. I should not have been able to read as low on the chart as I could with the amount of correction I needed. She also said this was quite comman in kcers post graft, but did not happen in people who had grafts for other reasons. I think we get used to dealing with poor vision we use our vision better than other people. Take away the coping time and we would find vision after grafts would be less overall. That is my theory anyway.
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