Registered partialy sighted post graft

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rosemary johnson
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Posts: 1478
Joined: Tue 19 Oct 2004 8:42 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: East London, UK

Postby rosemary johnson » Wed 30 Aug 2006 6:30 pm

Good luck with the medical!
Many peopel find them very depressing - because to get through the assessment for benefits, you have to concentrate on all the things you can't do - and how badly off you are on a bad day - rather than concentrate on all the things we can do, and how well we manage on a good day, and all our little strategies for coping.
keep remembering to tell them all the down side - but don't let it get you down too far.
SOme people find it helps to have a friend nearby, who can take you for a drink (coffee, pizza, etc) afterwards and help you cheer up again.
Rosemary

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james mckinlay
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Posts: 211
Joined: Wed 01 Jun 2005 9:49 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles
Location: cumbernauld just outside glasgow
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Postby james mckinlay » Wed 30 Aug 2006 6:39 pm

I HAVE BEEN REGISTERED PARTIALLY SIGHTED.

I AM BLIND IN ONE EYE NOW BUT IT WAS EASY TO GET REGISTERED MY DOCTOR DID ALL THE WORK FILLED THE FORM IN AND THEN SENT IT AWAY AND IT TOOK ABOUT A YEAR TO GET THE ASSESSMENT BY THE VISUAL IMPAIRMENT TEAM.

JUST THIS WEEK I GOT MY CANE.
NOW JUST TO WAIT FOR SOME MORE ASSISTANCE.

JAMES

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naeemkhamkar
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Posts: 36
Joined: Thu 05 May 2005 12:19 am
Location: london/rochdale

Getting registered partially blind or blind

Postby naeemkhamkar » Thu 31 Aug 2006 12:47 pm

Hi Everyone,

After 4 grafts in my right eye and 4 rejections we have stopped my treatment. Recently I had my sutures removed and i have been feeling more photosensitive. I can barely open my eye even with my prescription sunglasses on. Prior to the removal if my eye was hurting I would go to sleep and hope that when I wakeup things would be better, this does that not help either now. As a effect of this my left eye is closing as well leaving me to either sit down or lay myself down. I also suffer from ulcerations in my blind eye due to the cornea tissue being dead it gets extremely waterlogged.

We tried lenses for my left eye but it was no good. When my left eye got irrated then I was left with one blind eye and the other in so pain it couldn't open, we decided lenses were not a option for me. I am now wearing prescription sunglasses, these give 6/7.5 (without i have 6/75). Given my current situation the shades are failing me as well now.

What can I do hear myself asking?
How am I supposed to live the rest of my life like this?

I am only 28 with my eldest child being 7 and our third due in November.
I am fighting inside as I was very depressed 2 years ago between grafts, I dont want to be like that again but I am going back downhill at a steady pace.

Please if anyone can advise me, I would very much appreciate it.
Ive had 4 graft rejections in right eye. I'm intolerable to lens in my left eye. Been 2yrs Ive learnt to live life with single ocular vision and I enjoy everyday as I have KC in my left eye. I live to enjoy everyday as it comes with my wife and children.

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Andrew MacLean
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Posts: 7703
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Postby Andrew MacLean » Thu 31 Aug 2006 3:02 pm

naeemkhamkar

Don't really know where to begin. 6/7.5 is pretty good vision, but useless if you can't open the eye. Have you tried prescription sunglasses that exclude more light (RNIB do them right up to 85 percent light exclusion.)

Whatever happens you are not alone. In addition to your family and the support they will give, the folks on this forum will give all the support they can.

All the best.

James

I look forward to seeing you demonstrate walking with a white stick :D

Andrew
Andrew MacLean

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naeemkhamkar
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Posts: 36
Joined: Thu 05 May 2005 12:19 am
Location: london/rochdale

Postby naeemkhamkar » Thu 31 Aug 2006 3:44 pm

Thank you james,

My glasses I wear now are border line legal for driving which makes them pretty dark. In the past i used to wear Oakley sunglasses they became my eyes so to say.

Yes family support is so imperetive and I wouldn't of since today without the love of my wife and children. My daughter attends moorfields appts with me and never lets me walk to the shops at night alone. She is always holding my hand.

In the past whenever I have approached my consultant I have been told I cannot qualify for partial sight registration blah blah blah... I just don't understand if a person is unable to cope or deal with normal day to day issues due to medical conditions then they shouldn't be restricted to a certain criteria, especially after 4 failed transplants.

I have always seeked salvation in the fact I tried my best till there was no more chance ie we are no down to 0% success in a 5th graft scenario. The medic team and I mutually agreed we left no stone unturned.
Lets see what the near future has in store.
Ive had 4 graft rejections in right eye. I'm intolerable to lens in my left eye. Been 2yrs Ive learnt to live life with single ocular vision and I enjoy everyday as I have KC in my left eye. I live to enjoy everyday as it comes with my wife and children.

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rosemary johnson
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Posts: 1478
Joined: Tue 19 Oct 2004 8:42 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: East London, UK

Postby rosemary johnson » Fri 01 Sep 2006 8:29 pm

Naeemkhamkar:
SO sorry to hear of the problems you've been having. I can thoroughly understand why you feel so down.
As regards registration:
WITH 6/7.5 vision you wouldn't qualify for registration on visual acuity grounds. However, if your lens wearing time is going down and down, this should be taken into account. Perfect vision for hardly any time is not exactly perfect living conditions!
So I suggest you try to badger the consultant again.
Unfortunately, it seems that it is an NHS postcode lottery again - different consultant have different ideas on how to apply the rules, and what one will allow, another won't.
Maybe you have one of the more hard-line cases.
In which case, I suggest you try asking for a second opinion.
It may also help if you can stress the difficulties you are having living your life, and the obstacles your eyes are giving you to trying to earn a living. If you can, stress how a registration will help. THis may be influential. (In my case, I was finding it hard to get training to continue working without the registration number.)
I do wish you luck! - hang in there,a nd strength to your elbow.
I do know it is a monumental and very offputting bureaucracy one has to battle with. Can you get in touch with a local RNIB office, or area SOciety of the Blind? - they often ahve people who can advise on things like filling in application forms, registration processes, benefits, etc.
Rosemary


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