New sight registration for KC?

[Anne Klepacz]

Sadly no. There would certainly have been more info here if it had come to anything.

[space_cadet]

I wish someone had told me when I was initally dx with KC that "yes you can end up legally blind" but each time I was asked I was told "no you can't" but what those who told me "no you can't" meant was you wont lose light perception but in under 18 months of being diagnosed with KC I Was in fact registered as "severely sight impaired" aka legally blind n now navigate the world with the aid of Cecil my white cane which time n time again has saved my sanity.

[space_cadet]

representation in what sense? we have to advocate for ourselves as without giving voice to our experience we can't empower others

[99jools]

I read the 2010 link with interest - appreciate that this didn't come to anything but was wondering whether anything similar has been/is being being actively pursued since? My current circumstances (recovering from regraft in left eye and with little useful vision in right due to lens intolerance) has made this very topical for me. RNIB and my local Vision Support team have been as helpful as possible but folk with 'variable' or 'intermittent' sight lost are not their usual clients and, particularly with the local team, their experience of issue arising for folk with KC seems limited.

I would definitely be up for a bit of campaigning to alleviate the boredom of being stuck at home waiting for things to improve, but would be grateful of any thoughts on how to direct my energies effectively.

[Britdazz]

Me too.
Even though I have a mild form of KC and am able to pass the medical including vision to keep my HGV licence and more surprisingly after reading the posts on here drive at night, I have had cause because of soreness to my eyes to have weekends without wearing my contact lenses, and my god talk about taking your life in your own hands, try even under escort walking across a car park on a busy Saturday afternoon, several near death experience's. We (my wife) started parking in disabled bays, legally wrong but morally right.

I thought at the time wouldn't it be great to be able to be classified as visually impaired/disabled and gain a blue badge for the odd occasion when required.

We are pretty much forgotten about when it comes to life and financial benefits and I worry about low income folk who must be forced into impossible situations in relation to buying the various fluids and maybe even replacement lenses.

I think the various eye professionals should be more vocal about KC patients, but in this world of austerity what hope?

Maybe someone more litarate than me can write a letter that we can copy and send to our individual mp's. Perhaps wall posters regarding this forum being sent to the hospital eye departments to gain more contributors and ultimately more folk contacting their Mps over issues relating to our condition and life's needs.

[space_cadet]

sadly when it comes to sight registration the procedure n burocracy doesnt take into account fluctuating conditions and or medication side effects which can leave .in a state of flux.

Personally I find it wrong when people who dont have a blue badge park in blue badge spaces and I do not think twice of reporting those who I catch doing it, as whilst the blue badge system has its faults due to each local authority able to stipulate silightly different criteria for a blue badge,

but as someone who is not only blind due to KC but has physical health issues I find it wrong that someone would abuse for want of a better word a space that I would need to prevent physical exhaustion. Especially if they have someone with them who can guide them, if your vision is seriously that severe you shouldn't be driving if that alone is your reason for taking the blue badge space as it is selfish to deny someone with physical limitations that space as your selfishness could and would lead to immense distress by others.

Please think twice before parking in a blue badge space if your only reason is due to your vision if you are not registered and do not have a blue badge, as I would think ud feel very guilty if someone with phyiscal limitations had immense distress due to walking / hobbling / wheeling that extra length due to you.

[Britdazz]

Thanks for your input.

Little taken aback, your comment regarding not driving. I take it you mean even though my corrected vision is better than the average person of my age without KC, and given I passed the newer DVLA enhanced eye test for HGV drivers, you feel my uncorrected vision should make me a burden on the state and my family by as you say not to drive?

Odd,

A balanced view has to be taken with all the medical conditions reportable to the DVLA by them.

As far as giving a little understanding to KC suffering folk going about their lives with uncorrected vision, obviously I'm in the wrong place.

[Jolly Roger]

I am pleased there has finally been a positive response to this important issue.

Britdaz you can try as an individual to write to your MP etc but your likely to get nowhere.

This is something our charity should be doing through a steering group under the banner of this charity.

As not even a newsletter has been issued by our Charity committee this year its clearly not a task they are prepared to undertake.

So whose up for being on this steering committee as there is alot of knowledge and personal skills here - yourself Britdaz, space cadet, others?
I'm certainly up for it.

KC is a progressive debilitating eye disease and when you get the stage of corneal transplant you realise there is absolutely no support out there whatsoeve.

[Jolly Roger]

Last newsletter according to here in 2016 -

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

[space_cadet]

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.