New sight registration for KC?

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John Smith
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Keratoconus: Yes, I have KC
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Re: New sight registration for KC?

Postby John Smith » Fri 10 Nov 2017 12:33 pm

Jolly Roger,

What makes you think that we haven't sent out a newsletter this year? Please PM me with your real name and address and I can look into why you've not received any.

Regards,

John
John

Jolly Roger
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Joined: Sat 30 Sep 2017 10:11 pm
Keratoconus: Yes, I have KC
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Re: New sight registration for KC?

Postby Jolly Roger » Fri 10 Nov 2017 10:54 pm

Last newsletter according to here in 2016 -

http://www.keratoconus-group.org.uk/new ... index.html

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space_cadet
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Re: New sight registration for KC?

Postby space_cadet » Sat 11 Nov 2017 5:33 pm

so if your vision is GOOD ENOUGH to drive, think y ourself d**mn lucky! some of us are registered as blind and have to navigate with either a cane or a guide dog due to our keratoconus and we would give our right arms to be able to be in your position.

I wish my KC was mild, Id be able to see my daughters face, see the colour of her eyes wich others inform me are a deep blue, see when she has food left on her face, see her smile which I have been told is contagious by others, see to read her a bedtime story without having to magnify the life out of it and then give up after a page due to a migrane from straining, Id be able to see her n her friends in the park without fear that cos theyv gone out of range that theyv been abducted!, Id be able to help her with her reading homework instead of having to ask someone else, Id be able to read letters school send home instead of having to be aburden to ask someone else to read them for me as I am a solo parent,ID love to be able to drive to take my daughter out to events which are a nightmare to get to on public transport or the hefty cost of a cab, take her to her friends parties instead of reliying on lifts out of sympathy from others, Id be able to see to take meter readings for the utilities companies and the list goes on

not to mention if anyone was to view themselves as a burden perhaps they should look at what they can do to empower themselves to have confidence in themself, enable otehrs into their world, enable others to have a insight as to how the world is for them, as people arent mind readers and whilst we may all have KC we are all affected differently by it.
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind. May 2017 a long cane user who is blind in a once sighted world

Jolly Roger
Regular contributor
Regular contributor
Posts: 58
Joined: Sat 30 Sep 2017 10:11 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: New sight registration for KC?

Postby Jolly Roger » Sat 11 Nov 2017 9:35 pm

we may all have KC we are all affected differently by it.


Amen to that

I dont think anyone is lucky if they are diagnosed with KC, a debilitating progressive eye disease. Your case Space Cadet is one of the most extreme I have read on here which everyone who is contemplating a corneal transplant should read. You have been so unlucky but you are an inspiration to the KC community and also your daughter.

Although you might be able to drive now you may not be able to drive in the future.

There is one fact for sure, that if you are one of the unfortunate ones whose KC progresses to the point were the only option is a corneal transplant thats when you realise how vulnerable you are - at work in everything you do as people are ignorant of the disease as its an invisible disability to them.
No medical recognition no white stick. Thats why there is a need for a new sight registration for KC, as it would provide the protection that the current legislation The Equality Act fails to provide for KCers

This charity should be campaigning for two things for KCers
1. as soon as KC is diagnosed that patients be offered CXL on the NHS
2. a new sight registration for KC

Sadly it is not.


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