newbie!

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

tinap555
Newbie
Newbie
Posts: 7
Joined: Thu 28 Feb 2013 2:16 pm
Keratoconus: No, I don't suffer from KC

newbie!

Postby tinap555 » Thu 28 Feb 2013 2:38 pm

Hi!

I'm new to here so apologies if I'm in the wrong place or you've heard this a thousand times before!!

I'm just after a little advice if anyone can help?!

I took my 18yr old son for an eye exam last week. He had been complaining that his vision was blurry in 1 eye. He had gotten scratched in this eye a few months ago by a cat so though it was problems from that. Anyway, he was in having his test for quite a while. When he came out the optician came out with "I wish you had told me about his eye condition before we started".....Erm what eye condition??!!!!!

She said he has Keratoconus in both eyes although one was worse than the other. She explained it as like a rugby ball shaped eye instead of a round one, told him he needs glasses but would eventually need contact lenses.

That's all I know!

So my main question now is what happens now?! Does he just get his glasses & go for regular eye exams, does the optician inform the gp or does he need to go see the gp &/or a specialist etc?

He has other health problems too so is regularly at the hospital & we are in south Yorkshire.

Many thanks xx

User avatar
Anne Klepacz
Committee
Committee
Posts: 2265
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: newbie!

Postby Anne Klepacz » Thu 28 Feb 2013 3:03 pm

Hi and welcome to the forum!
It's quite common for keratoconus to come on slowly and the good or better eye tends to take over, so it's often a while before people notice that the vision is deteriorating in the other.
The fact that glasses will be able to correct his vision means his KC is mild. As the optician said, if it progresses, contact lenses will correct the vision much better. But the rate at which KC progresses varies a lot between individuals - some people only ever get it mildly and may be able to stay in glasses. Most of us get our contact lenses from a hospital eye clinic, where the experts at fitting KC eyes tend to be, and where you get lenses at NHS rates which makes them cheaper.
There's also a fairly new treatment called collagen crosslinking which is designed to stop the progression of KC. That's only available on the NHS in a few hospitals at the moment (including Sheffield as you're in South Yorkshire) though NICE is reviewing its guidelines on the procedure so it may become more widely avaialble on the NHS.
So while you could wait and see how the glasses work for you son and whether there are any changes in his vision in the next 6-12 months before asking for a hospital referral, you could also ask your GP to refer your son now, so that a specialist is monitoring the condition and can advise you on the best options. As KC isn't very common, your GP may well not have come across it.
If you'd like our information booklet about keratoconus and other info, do e-mail your postal address to anne@keratoconus-group.org.uk and I'll send it to you.
Anne

tinap555
Newbie
Newbie
Posts: 7
Joined: Thu 28 Feb 2013 2:16 pm
Keratoconus: No, I don't suffer from KC

Re: newbie!

Postby tinap555 » Thu 28 Feb 2013 3:28 pm

Thank you so much Anne.

The optician did say that the glasses weren't a perfect prescription but they were the closest she could get so we're hoping they will help some. It sounds as if we are probably best to try & get a referral with him being newly diagnosed. I didn't realise it wasn't very common. Our doctor will love seeing us again as the son is the first patient he has seen with his other medical problems too!!

Oh don't you just love having kids :D xx

User avatar
jay87
Regular contributor
Regular contributor
Posts: 146
Joined: Tue 11 Oct 2011 9:24 am
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Peterborough, Cambs, UK

Re: newbie!

Postby jay87 » Thu 28 Feb 2013 8:23 pm

Your GP probably won't know much about it, most aren't very knowledgeable regarding KC! They'll probably refer you to an ophthalmologist at your local hospital. It can take a few months depending on how long the waiting list is. There they can fit him with specialist contacts for KC or talk through other treatment options.

Your sons experience sounds just like mine!! I was diagnosed Oct 2011, then 24. My vision got blurry and i was squinting all the time! My appointment took aaages too. Felt sorry for my mum outside twiddling her thumbs! That was when I was diagnosed aswell.

I remember my right eye went blurry when I was a lot younger, i thought it was an eye infection from the coloured contacts i was wearing. My vision was passable on a daily basis for quite a few years though before contacts were 'needed'.

If you have any questions fire away! There's no such thing as a silly question :D
Jake 8)
______________________________________________________
-4.75D Left eye -9.25D Right eye Specs. No change since 2011.
Dx with KC Oct 2011. Rose K2 lenses & specs for vision, using Peroxide & Pres. Free Eye Drops

tinap555
Newbie
Newbie
Posts: 7
Joined: Thu 28 Feb 2013 2:16 pm
Keratoconus: No, I don't suffer from KC

Re: newbie!

Postby tinap555 » Thu 28 Feb 2013 9:44 pm

Thank you!

Did you get referred to the hospital when you got diagnosed or was it only as it got worse? xx

User avatar
jay87
Regular contributor
Regular contributor
Posts: 146
Joined: Tue 11 Oct 2011 9:24 am
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Peterborough, Cambs, UK

Re: newbie!

Postby jay87 » Thu 28 Feb 2013 9:46 pm

Yeah I got referred straight away as they said glasses wouldn't do anything for me. I hadn't worn glasses/contacts atall until i was quite blind though. They do help quite a bit though (glasses), bit annoying looking back as they would have really helped whilst i fumbled around waiting for contacts!!
Jake 8)
______________________________________________________
-4.75D Left eye -9.25D Right eye Specs. No change since 2011.
Dx with KC Oct 2011. Rose K2 lenses & specs for vision, using Peroxide & Pres. Free Eye Drops

User avatar
jay87
Regular contributor
Regular contributor
Posts: 146
Joined: Tue 11 Oct 2011 9:24 am
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Peterborough, Cambs, UK

Re: newbie!

Postby jay87 » Thu 28 Feb 2013 9:49 pm

It's up to him really i guess what he prefers, but contacts will give the best vision
Jake 8)
______________________________________________________
-4.75D Left eye -9.25D Right eye Specs. No change since 2011.
Dx with KC Oct 2011. Rose K2 lenses & specs for vision, using Peroxide & Pres. Free Eye Drops

tinap555
Newbie
Newbie
Posts: 7
Joined: Thu 28 Feb 2013 2:16 pm
Keratoconus: No, I don't suffer from KC

Re: newbie!

Postby tinap555 » Thu 28 Feb 2013 10:15 pm

Thanks

I'm wondering whether he hasn't had the best information given by the optician really unless his eyes are not that bad. All we got told really is what he has, he needs glasses & then got slapped with a bill of £260 for them!! she didn't say anything about seeing the doctor or a referal.

JohnnyB
Newbie
Newbie
Posts: 9
Joined: Tue 19 Feb 2013 9:51 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: newbie!

Postby JohnnyB » Fri 01 Mar 2013 3:18 am

Problem is we are all different and KC patients progresses at differing rates.

Had KC for almost 30 years and mine started when I was in the UK in my early 20's (now in Oz) with several return visits to the opticians, several pairs of specs later I ended up in front of a specialist at the hospital who diagnosed the KC.

Suggest if KC has been mentioned you see a GP and get to a specialist (at a hospital) who will put him under their care and see him regularly and explain the options if/when the KC progresses.

Mine hasn't over the years and I've managed well with RGP (rigid gas perm) lenses- but we are all different so best to be under the care of someone experienced in the field.

Hope this helps

tinap555
Newbie
Newbie
Posts: 7
Joined: Thu 28 Feb 2013 2:16 pm
Keratoconus: No, I don't suffer from KC

Re: newbie!

Postby tinap555 » Fri 01 Mar 2013 7:33 am

Help a lot! Thank you xx


Return to “General Discussion Forum”

Who is online

Users browsing this forum: No registered users and 39 guests