Let’s Talk About Keratoconus
I try and talk about my health from time to time, however, there are a few things I have only touched on slightly.
One of those is Keratoconus.
I think this is because in many ways I don’t know how to talk about it.
How do I explain what is going on with my eyesight? How it affects me in day to day life and the worries I have about the future. When in some ways I don’t understand it all that well myself.
When it comes to Fibromyalgia I can tell you how it hurts, with my hypermobility I can talk about how my joints hurt and move in mysterious ways, how my left arm has lost its weight-bearing ability of late. Even ME and my fatigue seem easier to put across in words.
What is Keratoconus?
Keratoconus is a progressive eye disease in which the normal round like cornea thins and begins to bulge. Becoming more cone-shaped than rounded.
This means light isn’t correctly entering the eye, which means hello distorted vision!
It can also cause issues with bright light. For instance, I find I need to wear sunglasses all year round and seeing at night is hard.
Personally, I have been short-sighted since around 7 and was treated for astigmatism since my teens. It might be an interesting fact that everyone with keratoconus has astigmatism, but not everyone with astigmatism has keratoconus. So don’t go panicking if you have one!
How Did I Find Out I had Keratoconus?
OK truth time here, I remember vividly when I realised I first needed glasses.
Being in the classroom and not seeing things properly, while also sitting closer to the TV screen at home were big indicators.
Over the years I had got used to knowing when I needed new glasses. The fuzz was obvious.
However, as I hit my mid-twenties, I knew something different was going on.
I couldn’t see the screen properly on the TV and light was becoming a problem to me. Certain lightly would leave my eyes feeling fatigued, sore and ever more blurry.
So what did I do.
Well what I am good at, ignored it.
I was scared, I knew this wasn’t the normal decrease in vision.
Of course, in the end, my parents and Ash caught on I wasn’t seeing things so well and that I really was due to go to the optician.
Who quickly referred me to a specialist.
It was the specialist who was able to confirm the diagnosis and who sent me onto a more specialist optician who was able to deal with my eyes.
How is it Treated?
While I was quickly fitted for RPG (Rigid Gas Permeable) contacts at my new opticians, I was able to carry on for a few years using glasses.
Which was a big relief as even now I hate my lens. They are tiny, drop out and are a real pain in the eye. BUT they allow me to see, for the time I am able to keep them in. So I can’t complain about them too much.
As it stands right now, I am only able to see properly while wearing contacts. Without them in, even wearing glasses I have no long distance sight, I can just about see my phone if I hold it in front of my face, as I have one eye which still has some vision in glasses.
I actually can’t wear my lenses for a week before hospital appointments and the things that go on are a bit crazy. I once mistook a cushion for Sally and jumped out my skin. My eyesight over this week also degrades as the days go on and I become a very annoying person to be around.
Looking to the Future?
Keratoconus does not ultimately lead to blindness.
This is due to the fact it is often well treated by the use of contact lenses.
Other things such as collagen cross-linking can help slow the progress. At the moment, after being transferred to a more specialist hospital I am having a series of topography (computerised corneal mapping) taken 6 – 9 months apart, to see if this would be worth it for me.
If your eyes progress past the point of contact lenses helping, then corneal graphs are possible as well.
To be honest, I do worry about the future, my shakes are bad now and I know they will only get better and I realise as I get old putting in contacts could become an issue.
What happens then? Do I just live in a blurry world?
Who knows.
I hope this has explained a little about my lens complaining issues and helped people understand this eye disease a little more.
If you have any questions please pop them below and I’ll try and answer them as best I can.
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Gosh, I had never heard of this before. You poor thing! My eyesight can sometimes be a bit blurry because of cataracts in both eyes, but they’re not at the stage where they need surgery.
Cataracts are awful – I hope you continue to manage OK – though I think the surgery is quite good these days for it?
I’ve not heard of this condition, thank you for sharing x
I’ve never heard of this before.
So glad to know that there are treatments available.
It’s so “nice” to see a post on kerataconus, though I’m so sorry it affects you. It’s something they kept a very close eye on me for as my dad had it very severely (he had a corneal graft in his 20s) but thankfully I haven’t. Things have moved on so much since my dad was diagnosed.
I am so sorry your Dad had to deal with going through a graft it is such a horrid issue to contend with. I hope his graft is holding up OK after all these years?
Gosh never heard about this much before, just relieved there are treatments available to you.
It is good to know they have slowed it a little now – sadly one eye was too far progressed by the time they did but at least one is hopefully going to hold out somewhat now.
One of my brothers and one of my sisters each have this. My brother had Corneal Cross Mapping in 2019 and is doing well, but looking back at his messages they can’t do this past a certain point. I do hope you can find a workable solution to keep things in focus for you.
One of my eyes was past the point sadly – I should really do an update on it as I wrote this a while back now. I’ve had CXL on my better eye which seems to have stabilised it, my right eye however is basically useless now. It makes me sad as if I had, had CXL when they found the issue, I would have had a lot more sight.
Gosh that sounds scary! I can relate to the bad eyesight, I can’t see anything without my glasses on, everything is just a big blur, I would love to be able to see clearly without glasses or contact lenses
It is awful isn’t it – I have to admit I did take for granted just being able to put glasses on having worn them for so long.
Gosh, I have never heard of this before. How awful for you – but thanks goodness there are treatments available.
Definitely, I do worry about how I’ll do as I get older and contacts get hard to put in but at least for now I have some vision.
I am sorry to hear that you have this condition. It’s nice to know that it is easily controlled with the use of glasses and contact lenses. Hope you stay well. x
As I said in the post – sadly glasses don’t work. It is only in the very early stages people can get away with wearing glasses, which is only a very lucky handful. Sometimes it progresses too far for contacts as well, however, touchwood at least my left eye shouldn’t get that bad, my right is already too bad for contacts and just uses a balancing lens.
I have a son with this condition. He has been lucky as up to now as his sight has not worsened since he was first diagnosed about 15 years ago.
Oh wow that’s good! I hope it carries on like that for him, I’ve just found out the only treatment for my right would be a transplant they are going to try crosslinking on my left though.
i understand vision problems i have optic neuritis with my ms it sucks
A very interesting article. I had never heard of keratoconus before and it does sound very debilitating for you. I too, was diagnosed with shortsightedness when I was 7 years old. I couldn’t see the board in school unless I sat at the front of the class. My eyesight has worsened over the years but now I am in my seventies the changes are not so significant. Another problem with old age is cataracts but that can easily be dealt with. Thanks for letting us know about your particular eye problem.
No problem I am glad people have found it interesting to read. Being short-sighted is a nightmare, isn’t it. I know some people have permanent contacts popped in when they have cataracts sorted with which sounds interesting.
When I was around 6yrs old my Mum had a cornea graft for what was only ever described to me as a conical cornea. I now know it was Keratoconus. Bearing in mind I’m talking about the early 70s you can image the cornea graft was a hugely major operation in those days, she was awake during the op and then had to spend 6 weeks lying completely flat afterwards. Thankfully her other eye responded well to wearing contact lenses and never needed a graft but my childhood memories are peppered with times we were all down on the floor looking for Mum’s popped out lens until she got used to them. I had gas permeable lenses myself for years and found I needed to use saline drops regularly or my eyes dried & the lens would pop out, may be worth a try? x
Oh wow, I can’t imagine having something like that done while awake and then having to lay flat for 6 weeks! Amazing! I am so glad it worked for her though and other eye never needed one.
I do have dry eyes, I have to put in drops at least 3 times a day but I think it still gets a bit dry sometimes, might have to talk to the opticians and see if I can up it bit.
Poor you! You certainly have more than your fair share of health issues. It’s often difficult to explain to people what’s ailing us, and then I find that well-meaning people offer useless or just plain silly “advice” on how to relieve or even cure said ailment. I’ve had someone suggest Bach’s flower remedy for my problems! I know they mean well but it can sometimes be very annoying as what they are in fact doing is trivialising something that impacts my daily life.
I don’t do things in halves me 😉 LOL.
It’s so annoying isn’t it you just don’t want to say to them as you know they come from the best place but it’s just how do you explain it won’t work for you. That it sadly isn’t something cured so simply. I mean if only.
Thank you for the informative post – sorry to hear you have this eye condition. Sight is something we often take for granted. xx
It really is, I used to take for granted that I could just slip on glasses. I’m sure in a way I take my contacts for granted as well.
I wish you all the best for the future and hope it’s all goes ok
Thank you very much that means a lot.
Really informative and interesting. I have a few eye problems, fingers crossed that they will get a cure for oscillopsia too!
Oh no I hope they manage to find something to help. Wouldn’t cures be lovely.
I think you have a great attitude to this health issue, thank you for an informative post that isn’t littered with medical jargon . ?
Thank you so much, I try and explain things as I understand them which is pretty basic to be honest.