(16 Posts)
Iusedtobeapartygirl Fri 24-Jan-20 19:55:35

I've recently been diagnosed with this, and wondered if there are any other sufferers out there?

(for those of you who haven't heard of keratoconus it's an eye disease where the cornea is the wrong shape and it affects the eyesight.)

OP’s posts: |
Katharinblum Sat 25-Jan-20 09:33:27

Not me but my 2 sons aged 12 and 17. Oldest son hasn't seen any deterioration since he was first diagnosed at 13, youngest may have to have an op to remedy it in the near future - corneal banding. At the last review things hadn't changed so it's just wait and see. Seemingly it's hereditary and also common in asthma/eczema sufferers. Youngest son had a habit of rubbing his eyes alot which the consultant said can also be cause of it. He's now stopped doing it which may explain why it's possibly stabilised.
Oldest son wanted to join the RAF but sadly it's classed as a condition that precludes entry sad Got the impression that it can burn itself out in middle age.

tanstaafl Sat 25-Jan-20 09:59:14

Our eldest has it.
Both eyes have had the corneal cross linkage operation to prevent further deterioration.
If you’re being tested regularly you are on top of the condition op, not sure there’s much else you can do.
The operation was ~30mins but he was living in his darkened bedroom for 24 hours afterwards with curtains closed , no phone, Xbox. Had two types of drops (if memory serves) to put in for a couple of weeks afterwards.
Check up 2 days, 7 days, a month and every 3 months.
The deterioration stops in later life as with age the cornea hardens naturally.

underneaththeash Sun 26-Jan-20 20:41:16

Have you been referred for cross linking?

stayingaliveisawayoflife Sun 26-Jan-20 21:02:19

My husband has it and my niece and her Dad have it too. My niece will be having the operation when she is ten. My husband used to be seen at Moorfields but now he just has a regular sight test at an ophthalmologist opticians.

dimsum123 Sun 26-Jan-20 22:02:10

I've got it. Doesn't run in the family. I had severe eczema for many years and used to rub my eyes a lot and the consultant thinks this could have caused it.

I have check ups at moorfields, but it's been stable for 5 years. I've got glasses and contact lenses which correct it. Haven't had any surgery but I was told I could possibly have an operation that could virtually completely correct it, can't recall the name of the op, but it's not cross linking.

Iusedtobeapartygirl Sat 01-Feb-20 13:11:41

Thank you all who have posted and sorry I haven't replied!

I have been advised that I don't need cross linking unless the keratoconus progresses. I'm quite old to be diagnosed, mid 40s, so the Drs think it's unlikely my condition will get any worse.

I'm very lucky compared to many people with this disease. But I still feel rather overwhelmed by it all. Eyesight is so, so important, something which I hadn't really considered before.

OP’s posts: |


itsgettingweird Sat 01-Feb-20 13:28:43

I have it. Recently dignosed although I've been experiencing astigmatism deterioration for nearly 20 years!

However I'm 39 now and have been told my corneas will start to harden to unlikely to deteriorate more.

And I'm hoping it's true because last eye test was the first time I had a stable prescription!

Parker231 Sat 01-Feb-20 16:58:51

My DSis has it but no changes since it was diagnosed when she was a teenager. I have a mild form and only found out when I went for tests for laser eye correction - it meant they couldn’t do it.

Iusedtobeapartygirl Sat 01-Feb-20 18:36:49

It's good to hear from others with a milder form, who, like me, are not expecting any/much more deterioration.

I joined a couple of facebook groups when I was diagnosed, but they seem to be used mainly by people who have had or need transplants, or who have had some very difficult side effects to deal with. It's great that there is a place for people to get advice and understanding but it really scared me!

I really hope that my Drs and optician are correct in that mine is likely to be stable at my age. The prospect of needing surgery is frightening, although not as frightening as the thought of not being able to read, drive, go to work, etc.

OP’s posts: |
Panicmode1 Sat 01-Feb-20 18:42:21

I have recently been diagnosed with it (at 46) and only in my right eye so my specialist was confused as it's rare to be diagnosed at this age, and even more so to only have it in one eye.

Have also been told that it's mild and given my age, unlikely to progress. DS and DH also have severe astigmatism but haven't got it, so hopefully I'm just an anomaly!

Iusedtobeapartygirl Sat 01-Feb-20 20:44:09


Youe case sounds almost identical to mine, also only in my right eye. No one else in my family has it, as far as anyone knows, the Dr said that I might have a genetic mutation that has caused it.

OP’s posts: |
kwest Mon 03-Feb-20 16:59:25

My eldest has it in both eyes. Consultant says probably caused by a massaging/cleansing routine following blepharitis/chalazion surgery. He’s had cross linking surgery in worst eye and will have surgery in his other eye in next couple of months. Surgery quite quick followed by couple of days of extreme pain and not able to lift anything heavy, no water in eye at all and a regime of various eye drops. His eye has healed well and noticed an improvement in sight too. I believe cross linking is the gold standard treatment and has to be carried out before the cornea gets too misshapen.

Gooseygoosey12345 Sat 21-Mar-20 20:40:43

Bit late to the party but I've just been diagnosed with this today. The advice says it stops degenerating around 30 and I'm nearly there so I think that's good! I've had it at least a year (couldn't get a prescription that worked for me, found out this is why) and not noticed any degeneration of sight since then. Weirdly only in my right eye too. Have to wait for a hospital referral so won't be getting answers anytime soon in the current climate. Just wanted to talk to people who were also diagnosed with this, I like to have all the info and other people's experience so I don't freak myself out grin

Iusedtobeapartygirl Sun 22-Mar-20 13:50:58

Hello Goosey,

I've now got 2 pairs of glasses - one for reading and one for distance. They are not able to correct my eyesight 100% but they do make a difference.

I'm just waiting now I suppose until I have a test in 11-12 months time. Hopefully there will be no further deterioration in my bad eye.

Hope it's all working out for you - I found diagnosis very frightening and I think I was in shock and traumatized for a few months. Seeing an opthalmologist privately helped (He explained it all carefully to me, and I was able to take my time, ask lots of questions) as did counselling (again, I paid for that privately). I feel like I'm at peace with it all now, but it's taken 6 months. So be kind to yourself!

OP’s posts: |
Gooseygoosey12345 Mon 23-Mar-20 18:04:30

Brilliant thank you! I'm ok with the diagnosis from a psychological viewpoint. I've had lots of problems over the years with my eyes so it's not a massive shock that something else should be wrong! I hope yours settles for you too.

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