New sight registration for KC?

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

Click on the forum name, General Discussion Forum, above.

Moderators: Anne Klepacz, John Smith, Sweet

Jolly Roger
Regular contributor
Regular contributor
Posts: 57
Joined: Sat 30 Sep 2017 10:11 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

New sight registration for KC?

Postby Jolly Roger » Sat 30 Sep 2017 10:25 pm

I was diagnosed with bilateral KC in my early 20s and have been reading here for a few years to improve my knowledge and understanding of a complex progressive eye disease and thought it was time to register and make my first post.

Its over seven years since this topic appeared and wondered if anything positive came from it?

https://www.keratoconus-group.org.uk/fo ... php?t=5697

User avatar
Anne Klepacz
Committee
Committee
Posts: 1967
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: New sight registration for KC?

Postby Anne Klepacz » Thu 05 Oct 2017 9:31 am

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

User avatar
space_cadet
Champion
Champion
Posts: 795
Joined: Tue 12 May 2009 11:46 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Leeds
Contact:

Re: New sight registration for KC?

Postby space_cadet » Thu 05 Oct 2017 5:12 pm

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.
6.5.9 DX KC Lm RSevere
14.8 R on list
22.1.10 Bump up list
11.3 R FULL THICK
29.3 Legally Blind
29.4 1/2stitch out
23.6 All stiches out
5.11 R Cataract dx
10.2 Block R found
(and more)

Jolly Roger
Regular contributor
Regular contributor
Posts: 57
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 21 Oct 2017 8:42 pm

Its so sad that there is no representation in the UK for those diagnosed with KC.

User avatar
space_cadet
Champion
Champion
Posts: 795
Joined: Tue 12 May 2009 11:46 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Leeds
Contact:

Re: New sight registration for KC?

Postby space_cadet » Sun 22 Oct 2017 9:40 am

representation in what sense? we have to advocate for ourselves as without giving voice to our experience we can't empower others
6.5.9 DX KC Lm RSevere
14.8 R on list
22.1.10 Bump up list
11.3 R FULL THICK
29.3 Legally Blind
29.4 1/2stitch out
23.6 All stiches out
5.11 R Cataract dx
10.2 Block R found
(and more)

99jools
Newbie
Newbie
Posts: 2
Joined: Wed 28 Jul 2010 8:41 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: New sight registration for KC?

Postby 99jools » Wed 08 Nov 2017 10:17 am

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
Contributor
Contributor
Posts: 11
Joined: Sat 28 Oct 2017 6:08 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: New sight registration for KC?

Postby Britdazz » Thu 09 Nov 2017 7:10 am

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.

User avatar
space_cadet
Champion
Champion
Posts: 795
Joined: Tue 12 May 2009 11:46 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Leeds
Contact:

Re: New sight registration for KC?

Postby space_cadet » Thu 09 Nov 2017 8:09 am

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.
6.5.9 DX KC Lm RSevere
14.8 R on list
22.1.10 Bump up list
11.3 R FULL THICK
29.3 Legally Blind
29.4 1/2stitch out
23.6 All stiches out
5.11 R Cataract dx
10.2 Block R found
(and more)

Britdazz
Contributor
Contributor
Posts: 11
Joined: Sat 28 Oct 2017 6:08 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: New sight registration for KC?

Postby Britdazz » Thu 09 Nov 2017 5:33 pm

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
Regular contributor
Regular contributor
Posts: 57
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 » Thu 09 Nov 2017 11:42 pm

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.


Return to “General Discussion Forum”

Who is online

Users browsing this forum: No registered users and 15 guests