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Eye condition keratoconus

(15 Posts)
alphabill Thu 02-Feb-17 16:31:58

Hi,
My 18 year old ds has just been diagnosed with the eye keratoconus. He is waiting to see a cornea specialist.

Does anybody have any experience of this, obviously I am worried about the long term implications of having this condition.

Any help or advice would be gratefully received.

Thanks

Redglitter Thu 02-Feb-17 16:34:43

I've had it for about 25 years. I had a corneal transplant 20 years ago but my eyesight has deteriorated quite significantly again. The hospital are trying contact lenses just now but I think ultimately I'll need more surgery.

Thankfully not everyone needs surgery and hopefully corrective contact lenses will help him.

nextchapterplease Thu 02-Feb-17 16:37:40

My DH has this - diagnosed only approx 14 years ago. It hasn't deteriorated at all in that time period - he is nearly 50.
Must be hard not to worry when your DS is so young but wait and see what the specialist says. Good luck !

girlelephant Thu 02-Feb-17 16:52:46

I have it and was diagnosed about 2 years ago. I went to a new optician who picked it up and referred me. I have slightly blurry vision and was recommended to wear special contact lenses but they are hard lenses and I couldn't abide them after years of soft lenses or glasses. I don't wear the contact lenses but my eyesight is good overall so I can still drive and do all normal things wearing normal glasses.

I do sometimes get dry eyes but only if I spend lots of time in work at a PC so it's avoidable.

I found a useful forum about it where lots of members shared advice and many have been through surgery or are expecting too in the short term. If I can find it I'll post the link

girlelephant Thu 02-Feb-17 16:55:23

Sorry not sure how to post as a hyperlink!

http://www.keratoconus-group.org.uk

alphabill Thu 02-Feb-17 17:04:17

Thanks for all your replies, feeling more reassured. Thanks for the link girlelephant, I will take a look. I think his optician was concerned about the rate of change, it's mainly his right eye that is affected.
Will he struggle with the hard lenses? I feel really sorry for him as he is in his A'level, and I know he is worried.

girlelephant Thu 02-Feb-17 21:32:03

Not necessarily as when I looked it up I found lots of people like me just had the contact lenses and if no degeneration no concern. I had worn soft lenses and glasses for years and just didn't find the hard lenses comfortable, but that's just me! Unfortunately they cost me about £100 from memory as they are only subsidised on the NHS and were made personally for me.

I was lucky that the blurriness wasn't too bad so I can wear glasses. An optician just explained it to me that my eyesight would be good enough to drive etc but that glasses could not correct my vision to "20/20" as we spoke about it.

Hope he gets on okay once he is referenced.

Mamabear14 Thu 02-Feb-17 21:43:41

My DP has this. He is blind as a bat grin. He is almost at the level for corneal transplant but at the moment has special lenses and drops for dry eye. He uses an antibiotic drop twice a day plus blink drops as and when. It doesn't impact his life, apart from he struggles to drive at night.

Mamabear14 Thu 02-Feb-17 21:48:12

Also, the optometrist mentioned something about a collagen treatment before transplant, but I'm not entirely sure what it actually was, the lenses I think are about £115 or were last time we had a pair. I hope your son gets on well now he's been referred

cheeseandpineapple Thu 02-Feb-17 21:51:54

My brother was diagnosed with it around the same age as your son. He was prescribed hard contact lenses and got used to them quickly as he hadn't worn lenses before.

When he was in his 20's he was recommended for a corneal transplant and was admitted to hospital for it and was all set to have it done when the op was cancelled at the last minute apparently due to concerns about the donor material being a sufficient match. He has continued to use lenses for the last 20 years and there hasn't been any mention of surgery so far except cataract removal. For the time being the lenses seem to be controlling the condition.

His vision is not perfect even with the lenses but it hasn't prevented him from doing most things. Night driving can be tough and sometimes his lenses play up if he gets dirt under them which can be a pain literally for him. He has glasses now which he can use too. They help but even with them still won't have 20/20 vision. Hard to envision what his reality looks like but I guess he doesn't know any different as it has been that way for so long and he seems to just get on with it. I understand things can look a bit wavy not just blurry.

He works in finance and has to look at spreadsheets a lot and figures which he seems to manage. No issue with his studies, he did very well.

There's always the risk of further deterioration but at the moment his eyes seem stable. My impression is that he has a moderate form of it and is affected mainly in one eye more than the other.

It's a bit alarming when you first hear about the condition and what it means but it seems to be something that can be managed and so long as your son wasn't aspiring to be a pilot, shouldn't prevent him from doing anything he wants!

user1486071876 Thu 02-Feb-17 21:53:46

My son has kerataconus. It is vital that you see the specialist as soon as possible as there is now a treatment called crosslinking. This prevents the kerataconus from progressing. However if the cornea is too thin it can not be done.

My son had a lot of changes to his cornea and his vision was changing frequently. After cross linking is eyes are now stable and there has been no change in 5 years. He was 14 when he was first diagnosed and we paid privately however crosslinking is now available on the NHS.

Most people with kerataconus get better vision with contact lenses however the actual kerataconus can make wearing lenses painful. However a specialist contact lens fitter should have several different options to help with this. My son at the moment piggy back his lenses so wears soft lenses and then rgp on top of these.

Crosslinking really is worth looking into as it can prevent the need for a transplant

cheeseandpineapple Thu 02-Feb-17 22:00:56

On your question about getting used to hard lenses, if you've been used to soft first, tough to switch to hard as a PP mentioned.

I'm short sighted and tried gas permeable (hard) lenses as my first try at lenses and didn't bother persisting because I had the option of going soft so I didn't try them for long enough. Might have got used to them with a bit of time.

My brother didn't seem to have any problems getting used to hard lenses.

Interesting that user's son uses soft and hard, haven't heard of that but maybe that might help if your son struggles with hard ones initially.

user1486071876 Thu 02-Feb-17 22:21:15

There are contact lenses especially for keratoconus. Soft are not usually much good on there own as they can not work with the cornea shape.

Scleral lenses are very large and rest on the white of the eye which is usually easy to fit and more comfortable for the keratoconus patient.

There are also hybrid lenses and Rose K _ not sure if this is hybrid or soft but again is worth considering .

underneaththeash Thu 02-Feb-17 22:27:13

There are lots of contact lens options now, I tend to use the hybrid lenses for early keratoconus which are a hard centre and a soft skirt around the outside.

BUT I really would look into collagen cross linking, it can make a huge difference to the progression of the disease.

alphabill Fri 03-Feb-17 21:10:18

Thanks to everyone for all your helpful replies. Definitely will be looking at cross linking, my optician did mention it. We are initially being referred to GWR in Swindon, but there is a cornea specialist in Southampton who does cross linking. Feeling a lot happier, thanks again.

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