newbie!

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

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GarethB
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Ambassador
Posts: 4916
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Re: newbie!

Postby GarethB » Fri 01 Mar 2013 8:13 am

As far as I am aware, it is only an opthalmologist that can make a formal diagnosis. This is because KC can be easily misdiagnosed, so there is no harm in getting a letter from your optomotrists to take to your GP and get a referal.

If it is at its early stages, there are options open to you that could halt the condition, but you are bessed discussing this with an ophthalmologist at the hospital to decus the pros and cons so that you make an informaed decision as any medical procedure does carry potential risks.

Glasses are expensive and it is a mis conception that contact lenses are cheaper becasue through the NHS, the hospital will provide the lenses but you have to conribute just over £50 per eye unless you are in full time education or on benefits. There is then the after care costs which are often in excess of £400 per year.
Gareth

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 8:41 am

Thanks Gareth :)

Yes I know the expense of glasses unfortunately, 4 out of 5 of us wear them & only one of those still at school. Never went for contacts myself as I can't stand eyes & the thought of shoving something in them makes me shudder!! :D

Hopefully will be picking the sons glasses up over the weekend so ill have a more informed chat with the optician xx

Kris
Contributor
Contributor
Posts: 14
Joined: Fri 09 Nov 2012 11:18 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: newbie!

Postby Kris » Wed 06 Mar 2013 4:40 pm

Hey Tina,

I hope the glasses are working well?

My optician was the one who noticed something was odd with my eyes and she actually made the referral to go to a specialist at a hospital to get it checked out further. Her referral went to my GP, who then initiated it with the hospital, so both can get you started seeing a specialist.

I would definitely recommend going to a specialist asap, as waiting times can be a few months and you can always see them and your regular optometrist at the same time. In my case, the optometrist did not have the equipment to do a topography of the eye and diagnose KC.

Contact lenses are really not so bad, yes, they do take getting used to, but it helps that you never actually touch your eye (which is a total pet peeve of mine)!! I much preferred vision with the contact lenses, as it covered my whole field of vision, rather than glasses, which are limited.

Good luck and I hope the glasses help!

All the Best,

Kris

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 » Wed 06 Mar 2013 5:23 pm

Thank you Kris :)

The son picked his glasses up yesterday & is so far amazed he can see!! Being a typical teenager, he forgot to ask the optician about a referal so I'm going to take him to see the gp next week & see what he says. Xx

Kris
Contributor
Contributor
Posts: 14
Joined: Fri 09 Nov 2012 11:18 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: newbie!

Postby Kris » Thu 07 Mar 2013 5:32 pm

Hey Tina,

that's brilliant news, very happy for your son!

Definitely keep at it to get a referral for a specialist, it can't hurt, even if they say that currently the optometrist is the best to treat the KC, as the ophthalmologist can still monitor it and there is no delay should it get worse or he needs other treatment options!

Glad to hear the good news!

munster
Regular contributor
Regular contributor
Posts: 117
Joined: Sat 29 Oct 2011 7:23 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: newbie!

Postby munster » Tue 12 Mar 2013 11:01 pm

I didn't get diagnosed with KC until my early 30s.

I was seeing unaided ok till around 2005, when I was diagnosed. I wore glasses for about a year or two. I could see my vision start to deteriorate, and had many prescription changes for glasses. Started with contact lenses around 2007 when glasses could no longer help. I'm now struggling to get working contact lenses :(

During 8 years, I have gone from unaided vision to only just seeing the blurry top two lines on the eye chart. They said it was late, aggressive KC progression. It was kind of depressing to see my life change so much in such a short time.

Hospital have so far unable to fit me with Kerasoft ICs. They ordered another pair, which I told them wasn't right at the fitting. Bless her tho, she was a young student Optrom. I've been told that my corneas are quite difficult to fit. So her lack of experience may start to show up :( It all costs time, that seems to be wasted.


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