UK Keratoconus Self-Help and Support Association

Is anyone local to Luton and dunstable:(? I wish.I could.chat and get help from soomeone:(

Hi Ahmed

Hope you don't mind, but I've moved your post to a new thread so other members can hopefully see the title and respond with location-specific information if they have any.

I've also responded to your post in the "New member 'bubbles' & 'dent' any advice welcome" thread.

Sorry I didn't sort out your posts earlier -- I'd not checked since early yesterday.

If you could also give us a bit of any history and backstory about your Keratoconus and what treatments you've had to date, that would be of help. Are you currently under the care of a specialist clinic -- or just a optician, say ? Also, have you spoken to your GP at all ?

Best wishes

Chris

Ahmed my sons name 10 months m his mum fatima:) thanks Chris for responding I also kind of bombarded Lynn white hehe:) I feel at home:) well officially.diagnosed in 2010 June but life.then was.hard for me couldn't take things in. Pregnancy came and birth as KC advanced. Now counting fingers.right eye.and 6 60 left.eye as of yesterday. No help whilst waiting for surgery which I still.haven't.agreed to. I asked about.registration and dla the future always.talked about. So what.help for now:( nothing:(

Opthamologist in June 2010 was quite blunt. Just gave me a postc!rd of a lens specialist and that was all. Saw new opthamalogist yesterday and KC advanced. Too bad so straight to surgery.

Hi Fatima -- very very sorry about getting the name wrong !

First off, yes, definitely register for DLA. Frankly if someone in your situation doesn't get deemed eligible then a) it would be a disgrace and b) you'd have to ask who would get it. The forms for applying are pretty daunting though. As in, really horrible. What I'd suggest if you're not a real expert on filling in forms is to go along to your Citizens Advice Bureau and ask them to help you. There's one in Dunstable, hopefully not too difficult to travel to.

http://www.dunstablecab.org.uk/

Before doing that though, I'd also sugggest you contact your GP (make an appointment to see him/her). Tell them exactly what you've told us here on the Forum (about how bad your sight is now and that you've had a corneal graft or grafts indicated as the only possible treatment -- which you're still considering). Say that you'll be applying for DLA and ask if the GP is okay with being listed as "the person who knows you best" on the DLA application form. Suggest to your GP that the opthalmologist should have sent a note of the diagnosis, but if they haven't then the GP might like to contact the opthalmologist, just so they know what the prognosis is. The reason for doing this is that, unfortunately, the DLA assessment team place way, way more weight on medical evidence than on self declarations or a layperson's opinion. Not right, but that's how the system works in reality. Hopefully your GP will understand how important this is for you. You could even print off this post and take it to your appointment, if you're anything like me when faced with a medical-type person, my normal intelligence abondons me and I end up gibbering inanely !

If your GP is agreeable, then go to the Citizens Advice Bureau (CAB) as I say and ask them to help you with the DLA form. If you are feeling really brave, you can apply for DLA yourself here:

http://www.dwp.gov.uk/eservice/

... but given the severity of your visual impairment, I'd really recommend you ask for help at the CAB.

Finally, not an easy decision when considering whether to go opt for a graft; I know that I basically dithered for a whole year before deciding. It was one of the hardest choices I've ever had to make. Let us know if there are any factors about the decision which you need advice on. No-one can really say what is right or wrong for an individual but if there's information you need, probably someone here who can help find it.

Best wishes, good luck,

Chris

Tplease don't sqy sorry u didnt know im. Fatima or even a woman:) ok ill get my doc to read the post:) has anyone ever registered blind or partially sighted and dla. and they.got it as its so daunting being blindish and no help:s

Ahmed

I was registered blind and immediately found that I was entitled to all sorts of help.

Only a consultant ophthalmologist can sign the documents that register a blind or partially sighted person, but the patient has to agree to being registered.

Every good wish.

Andrew

Andrew opthamalogist not willing to register me at all:s he says look to the future:s no dla help too:s

Andrew the friend who took me to the eye doc is a wife of a wonderful Baptist minister of church:) she felt the doc was nice but he wont register me it help with dla so m a bit wary:(

Chris/Andrew

Having talked with Fatima,the issue appears to be that she has the potential for good vision via a graft (hence the "look to the future" remark) and thus the ophthalmologist feels that he cannot register her as partially sighted/sight impaired. (The level of vision she has reported here is not enough for severely sight impaired.) Obviously, though, any "potential for good vision" is about 18 months away in reality, as no-one can predict what will happen with vision post graft before the sutures are out.

There does seem to be a reluctance to register by some ophthalmologists, in that they feel registration is only applicable when there is end stage loss of vision with no hope of restoration. This is why I am so keen to try and push for temporary registration, to help people in a transitional stage to obtain the help and benefits they need. I think this is particularly the case with DLA, I feel.

There is also a general issue for people with KC, whereby better VA may be obtained through contact lenses but for various reasons of non tolerance, mental health issues or other disabilities, it is impossible for the patient to wear them. Do they fall into registration or not? In my view, it is the practical reality, not the potential for vision, that should be taken into account.

I will be meeting Fatima next week to see if I can help in any way.

Lynn