Can anyone reassure me at all please? Kerataconus and I’m terrified

[TheCoolTiger]

Am hoping for some reassurance if anyone has any as I’ve tipped over into complete panic. Was diagnosed with kerataconus a year ago at age 52 after my astigmatism kept getting worse with every annual/ biannual eye test. I don’t even want to put the figures down as people would likely be shocked!

For the first time my high street optician did a corneal scan which revealed the disorder. I panicked, but calmed down when referred to the local hospital eye department. Saw them 6 months later and they scanned my eye, said they’d refer me to the contact lens clinic, and would have meback in 4 months for a repeat scan.

Here I am 7 months later still waiting, and when I phoned to chase, was told the corneal consultant left a while ago and another one will be starting in a few months. The wait (and now several months more waiting ahead!) has tipped me over into panic that I’m going to lose my vision. I know there are options like cross-linking, but that sounds terrifying! And they say the cornea stabilises in middle age but as I said, my dioptic (?) number was getting higher every time I went for an eye test.

Unhelpfully (but accurately, I’m guessing) the last consultant said many people can’t tolerate the hard lenses for this condition, so feels like that’s another avenue closed. I’ve never worn any contact lenses at all.

Any positive stories or advice would be appreciated more than I can say.

Ask for a referral into the Eye Care Liaison Officer at the Eye Hospital you are under for some support with your diagnosis x

3 of my siblings have this, and 2 have had cornea grafts. One of the 2 who had grafts has lost the sight in one eye, but from a fall where she got a detached retina .
Because there is such a strong family history, I have screening every year but am so far okay. I didn't realise it could be diagnosed so late in life (not calling you old, I'm 53!). Thank you for the reminder to book an eye test.
My understanding is that it doesn't progress at great speed, but the waiting must be very stressful. I hope you get some treatment soon.

I have had keratoconus since my early / mid 20s. Now 54yrs. Astigmatism 9+. Still wearing glasses - varifocals now but driving / reading no problems. Don't panic! I have had gas permeable lens from the hospital which were great when they sorted the problem but now with the contact lens I need reading glasses which defeat the purpose of lens for me! So I just wear the varifocals and all is fine.

My son has this. Picked up aged 16. He had cross linking which does sound horrendous but wasn’t too bad and one eye at a time. Really hurt for about 2 days (had oramorph) and then was very light sensitive for about 2 weeks.

You have worked absolute wonders with this post - thank you SO much. My astigmatism is +7 and my optician was worrying me by saying it’s very hard to find anywhere that makes glasses to that specification now! Can I ask if your prescription has stayed stable? Mine increasing every eye test is what’s worried me more than anything. That and reading today that Kerataconus is accepted by the DWP as a qualifier for PIP!

I’m so happy to hear glasses are still working for you, and that you were able to tolerate the lenses! My glasses work well for me at the moment, but I do find it hard to read books unless the print is very dark and the background very white, which is gutting! Finally have the time to read now my children are older - and I can’t do it without difficulty. There’s one font on Kindle which works pretty well. The optician told me reading glasses wouldn’t aid me much seeing as astigmatism is the main issue!

Thank you - I’m glad your son didn’t find it as horrendous as I’m imagining! Has it completely stabilised his vision?

Thank you - I’m guessing I’ve had it for a long time but weirdly my prescription stayed more stable when I was younger, so it just seemed like common or garden astigmatism. I do remember my optician pointing out ‘peaks and troughs’ on my corneas about a decade ago and warning me not to rub my eyes. But for some reason she didn’t mention kerataconus then, grr

Glad my experience is encouraging. I went through eye test every 6 months in my 20s and early 30s but now much more stable. My frames have to be sent to France for the lens to be custom fitted now - takes about 6 weeks and not cheap but still possible with glasses. I have lots of allergies but still managed to tolerate rigid lens when they completely resolved my visual issues, but now I am older would still need reading glasses so am less included to tolerate lens while my varifocals can correct my vision. I use and e reader these days but that's fine for me! Newspaper and crosswords remain challenging! But generally I don't feel massively compromised at this point after 30+ years and my prescription has definetly stabilised.

All I find on Google is horror stories, so really priceless to talk to you! Very interesting about your lenses being fitted in France - mine are already very expensive, so my loins are already girded on that front 😁. Sunglasses are even more extortionate!

Do you have any extra monitoring, or just annual eye tests? And does your prescription still change at all (on the astigmatism front)? The need for reading glasses now does complicate matters - are yours just +1? It’s such a relief to know that some people do tolerate the rigid lenses, as I’ve read (horror stories again) of most people finding them too uncomfortable.

Am so sorry to pepper you with questions! But lastly, do you know the name of your e-reader font? Recommendation would be great.

Thanks so much again, with apologies!

Bless you for worrying. I’ve got it and cannot wear lenses at all. I had cross linking in both eyes a few years ago which showed things down.

I use my Kindle with a large font, I cannot read books at all. Though I’ve really started to prefer audio books as I can multi-task and saves my eyes.

Like a PP I previously needed 6 monthly eye tests for years. But I’m now annual.

i struggle with small font day to date to cooking instructions on packaging, clothes labels. My night vision is awful so I cannot drive outside of daylight.

I live in a massive city but only 2 opticians will manufacture my lenses for my glasses as my prescription is so complex. I have them thinned as much as possible but they are still very think.

Large font doesn’t make a difference to me as it’s just bigger slightly-blurred letters 😁. I need to move more towards audiobooks but feel sad at the thought of never being able curl up with a book again!

Can still drive at night but feel a lot less secure - my eyes don’t seem to do well with all the headlights!

Luckily my glass lenses aren’t too thick but they are quite heavy, so I need to have super light frames to compensate. And the lenses cost a FORTUNE. Sigh!

Thank you - I do wish the lenses were easier to tolerate, as they do say they offer much better vision correction. Can I ask if the cross licking was as scary as I’m imagining?

I have it in one eye, diagnosed in my 40s which is apparently quite old for first diagnosis.

I tried the sceral lens at the hospital eye clinic but just couldn't do it. I ended up weeping!

I was very upset by the whole thing and had therapy which really helped. I also paid for a private opthalmologist appointment so I had time to ask questions and have everything explained to me. I was told that at my age it was unlikely to get worse.

I manage with glasses with a prescription for my non-keratoconus eye. My bad eye can't be helped with glasses.

As long as I have good vision with one eye I can manage. I need very good, focused light to he able to read, and no longer drive when it's dark as the overlapping halos make it too difficult to see clearly.

I initially thought my life was over. Now I'm fine. I can't see as well as before but I have a normal life.

The Kerataconus has stabilised though he is due another check up. The astigmatism not yet but his is ‘only’ -4 - which I thought was bad enough

He has only just turned 20 so still growing which is a factor as well

My cousin has this. He wears gas permeable lenses and doesn't like to drive at night on dark roads. He is fine driving where there are street lights. He's 53, works in a job with computer screens, reads lots of sports magazines (but I've never seen him read a book), manages completely fine.

Funny, we were just talking about it last weekend because he was saying about the dark nights and how that restricts his driving a bit. The only other time he ever mentions it is if he's been for a new pair of glasses. They're pretty expensive.

So that's my anecdotal experience. It doesn't have to be all that bad.

Thanks - really glad his kerataconus stabilised…if it’s any comfort, at -7 I can still see well with glasses (if hardly at all without!), but hopefully he won’t get that far!

At -4 I wasn’t even close to being diagnosed. I do wish the optician had worked out that an earlier scan was highly indicative of the condition. But nothing I can do to turn the cloak back.

That’s really interesting, haven’t heard of it only affecting one eye. I’m glad your good eye can compensate well enough though. The scleral lens being really uncomfortable is exactly what I expect would happen with me - really gutting.

Interesting about the therapy too - so glad it helped. I think I will need to look into going private as the limbo/ open ended waiting with the NHS is really affecting my mental health. I was fine until I started panicking that things could be deteriorating by the day (now that it’s been a year since my last eye test). Simultaneously too scared to find out for sure that they have!

All really good to hear, thanks. That’s how my life is when I’m not panicking - able to see fine in most circumstances but with certain limitations. Like always making sure I have a back up pair of glasses on holiday as god forbid I break my existing pair.

I’m really pleased to hear he is able to tolerate the contact lenses - gives me hope.

I have kerataconus. I was pretty spooked when they told me, I was early thirties, but apparently the older you’re diagnosed, generally the slower it progresses. I couldn’t stand the hard lenses and they kept falling out.

DH has it too - he was diagnosed at 20, and it was only in one eye. They told him that it would eventually affect both, but he’s now 46 and his good eye is still going strong. He was told his eye was too far gone for cross-linking, but had an Intacs operation aged approx 30, which wasn’t successful. I don’t think they do that any more. He can’t tolerate contact lenses either.

His care has been really patchy - although every time he walks into an optician’s they get really excited because of the Intacs ring, and generally get all their trainees round to have a look. He hasn’t been offered a corneal transplant yet, and I think that’s because he still has good vision in one eye.

He does complain about driving at night and wears sunglasses during day driving.

PS forgot to add, I absolutely love audiobooks! I have audible and also borrow audiobooks from the library with Libby and Borrowbox apps.

My son was diagnosed at 10, and it was already very advanced in one eye by then unfortunately. He had cross linking aged 11, and has decent vision in one eye now. One eye is essentially useless, but you can do a lot with one good eye!

He never got on with the gas permable lenses, we tried for years. He is 24 now and would need to find a way to make the lenses work if he was to ever want to drive, which so far he doesn't. He does have poor vision but he is able to work, read, make art, play music... The crosslinking saved his vision, he would be registered blind by now had we not had it. So I'm really grateful that the screening and treatment exists, he has a good quality of life which he wouldn't otherwise. The time in life when he was first diagnosed was really frightning and all consuming. However at the age of 24, and having really gone through it, if you were to ask him about his vision he'd probably tell you it's no big deal 😁

This website was really really helpful to me at the time: https://keratoconus-group.org.uk/

If I hadn't read about cross linking and pushed for it he wouldn't have got it - no one locally seemed to have it on their radar and we did have to travel quite a bit for treatment. But it is amazing treatment, and I'm just so so grateful we had it done

also I'm sure you know this @TheCoolTiger but don't rub your eyes!