diagnosis in 30s

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toffee
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diagnosis in 30s

Postby toffee » Mon 07 Dec 2015 9:08 pm

Hi,
I've just received a dx. Am nearly 34.
The optician acted like i'd received a death sentence so I'm pretty glad this forum is here so I can find out more about the condition.

I've been given a referral to see a consultant and the optician says I'm likely to need contact lenses.

Up until 4 years ago I didn't even need glasses. Had pretty much perfect vision.
I discovered I had a 0.4mm astigmatism when I was 21 because an Alexander Technique teacher told me my body wasn't aligned properly and suggested I get my eyes checked but at the time the optician didn't think I needed any glasses for it.

At my last appointment 2 years ago the optician noted slight corneal distortion and told me I had some problems with my night vision - but didn't mention any risk that it could be early signs of keratoconus or that I should avoid things like eye rubbing. I am a bit annoyed about that. I had never heard of keratoconus until 2 days ago.

I think the optician said something about my astigmatism being under 1mm 2 yrs ago but now being nearer 3. (she said a lot of figures I didn't understand them). She also made me look at a hot air balloon in a machine which took photos and then showed me picture of my eye with great big red splodges that are a 'bad thing' about my cornea.

So, I'm going to go to Moorfields. I have no idea what to expect.

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Lia Williams
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Re: diagnosis in 30s

Postby Lia Williams » Mon 07 Dec 2015 9:35 pm

Hi Toffee,

Welcome to the forum.

Your optician probably didn't mention that you were in the early stage of keratoconus a couple of years ago because your astigmatism was probably similar to regular astigmatism and keratoconus was probably not considered. Most people discover they have keratoconus when their prescription changes quite frequently and they keep complaining that their glasses aren't right.

What is likely to happen at Moorfields is that you will see an ophthalmologist who will confirm that you do have keratoconus. You then may be referred to the contact lens clinic. If you can see well enough in glasses you might not need contact lenses as although they can improve vision they don't stop keratoconus getting worse.

Lia

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CrippsCorner
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Re: diagnosis in 30s

Postby CrippsCorner » Tue 08 Dec 2015 9:20 am

Firstly, don't panic! Being diagnosed at 34 means things are working in your favour. Usually this disorder is discovered when people are in their teens or early 20s... this means there's a lot longer for vision to deteriorate. In general, keratoconus isn't going to progress after you're 40.

With any luck you'll be fine with glasses or contacts. However, it's not quite as simple as that as you may have problems such as driving at night (lighting can be awful) and double vision/reflections etc.

You might read about cross-linking (CXL) which is the only procedure you're likely to consider (hopefully you will never get as bad as to require a transplant) but remember this, which my consultant told me... if you're 25: definitely do it, if you're 35: don't bother. Unfortunately I was bang on 30 which didn't help my decision!

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Re: diagnosis in 30s

Postby Grant » Tue 08 Dec 2015 11:26 am

Hi Toffee,

I was around the same age as you when I was first diagnosed, became apparent when my glasses prescription went from changing every 18 months to every 6 months. Managed with glasses for a few more years until I reached the point I couldn't drive and swapped to contacts. Been through three different types of lenses and have pretty good vision now.

Let us know how you get on at Moorfields.

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Anne Klepacz
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Re: diagnosis in 30s

Postby Anne Klepacz » Tue 08 Dec 2015 11:39 am

Just to add that if you'd like our information booklet about keratoconus, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you a copy.

toffee
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Re: diagnosis in 30s

Postby toffee » Tue 08 Dec 2015 3:10 pm

Thanks very much for the reassuring replies.

I've been reading all the threads here on crosslinking. Quite a dilemma. I will have to see how fast it is progressing, but I know my eyes have got worse since Bonfire night so it is possibly quite fast. I suppose I will see what the consultant says. It's really good to hear it doesn't tend to progress much past 40. Is there anything at all I can do, apart from cross linking and not rubbing my eyes, that will slow down the progression?

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Anne Klepacz
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Re: diagnosis in 30s

Postby Anne Klepacz » Tue 08 Dec 2015 4:20 pm

Nothing else I know of. But the general rule is that the later KC develops and the milder it is on diagnosis, the less likely it is to progress very far. But there are always some exceptions to every rule, so here's hoping you belong to the majority!

toffee
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Re: diagnosis in 30s

Postby toffee » Wed 09 Dec 2015 4:45 pm

Thanks Anne.


For anyone interested, these are the eye measurements I had.
2015 - 0.75 and +2.50 (age 33/34 - diagnosed by optician and referred to eye hospital)
2013 -0.50 and +1.25 (age 31 - no diagnosis but slight corneal distortion and night vision problems noted)

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Re: diagnosis in 30s

Postby Natekoza » Wed 29 Jul 2020 5:36 pm

I know it’s been awhile since your post. I was recently dx I’m 34 years old and have KC mild in my right eye and very mild in left eye. I noticed a change to my vision almost 4 years ago and my prescription has changed very little.
I’ve been pretty worked up and worried for the past week. Any updates on yours?

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Anne Klepacz
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Re: diagnosis in 30s

Postby Anne Klepacz » Mon 03 Aug 2020 2:41 pm

Toffee doesn't seem to have been back to the forum since that last post, so I can only guess that all is well!
What has happened in the last week to make you worried when you say that there's been almost no change in prescription since you first noticed a change in your vision? As people said in reply to Toffee, a diagnosis of mild KC in your 30s almost always means it's unlikely to progress much if at all. Have contact lenses been suggested for you or are you still getting good vision with spectacles?


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