First Diagnosis of KC in both eyes aged 42 - 2 questions

[clarem]

Hello,

I was diagnosed with keratoconus in both eyes last week at the age of 42 after I started seeing double in both eyes. It seems it is uncommon to develop keratoconus at this age. I was just wondering if others have experienced this?
Also I have read KC is hereditary and also associated with allergies and autoimmune illnesses. As far as I know no one in my family has KC and I have no allergies/AI illnesses. I would be interested to hear if there are others who apparently have no allergies or autoimmune illnesses who suddenly developed KC or if I should start investigating my health further?

Thank you for writing

[Anne Klepacz]

Hello and welcome to the forum,
You're right - 'late onset' KC is much less common than being diagnosed in the teens or early 20s. But the up side of that is that the medics say KC that develops late is much less likely to progress very far (though there's never any 100% guarantees in this game!)
Current thinking is that there is a genetic component to KC, which isn't the same as saying it's hereditary. While there are families where KC seems to occur in several family members, 'random' KC is more common. And genetic studies are finding that it needs several different genes to come together before you get KC. Again, while it's true that people with KC are more likely to have hay fever, asthma or eczema than the general population, at least half of us don't have any allergies.
One of our health experts may be able to tell you more, but you're certainly not alone in suddenly developing KC in your 40s and without having any other health problems. Contact lenses should give you good vision again so hopefully you won't find KC has too much impact on your life.
All the best
Anne

[clarem]

Thank you Anne for your very helpful answer. I would be glad if it doesnt progress as its already quite hard seeing double. I have a check up in 3 months then we will know more. And I have a first appointment for contact lenses next week and hope that will help. Out of interest, does one get the contact lenses free of charge on the NHS in England? I live aboard at the mo and was just wondering.

Best wishes,

Clare

[longhoc]

Hi Clare

Good luck with your appointment.

Yes, lenses are usually free on the NHS at least in my experience. If you lost a lens there's a standard replacement fee (between £50 to £60, at least it was when I last lost a lens a couple of years ago). But there may be variations between different NHS Trusts who might have differing charging policies, some may charge the standard fee every time even if it's just because a new lens is issued as a result of a prescription change.

A lot cheaper than if you obtain your lenses through a private practioner in the UK (c. £200 to £300) -- but then you do have wait times for appointments... and not all lens types are offered by all NHS eye units.

Best wishes

Chris

[Anne Klepacz]

You were very lucky to get free lenses on the NHS, Chris! The vast majority of hospitals charge around £54 per lens - though that charge does cover a 12 month period, and should include any lens that's needed because of a change of prescription in that time. I think most hospitals also charge £54 for any lens that needs replacing because it was lost or broken.
Anne

[longhoc]

Yes, I think this may well be the first and only autenticated siutation where I've not had to incur out-of-pocket expenses in respect of Keratoconus

I should then really keep quiet about the name of the NHS Trust I know that doesn't charge if it's a replacement due to prescription change ...

Be interested in other's experience -- obviously a certain large London specialist eye hospital does, the one I used to attend somewhere in the West Country doesn't... wonder what the national picture is -- and if it's different again in Scotland ?

[dalbeath]

I was 39 when I was diagnosed.
But I'm afraid I do not fall into the "Late onset so slow progression" camp. Mine went very quickly so that 4 month after diagnosis my left cornea was too thin for CXL. At that point there was no sign of KC in my right eye but 5 months later there was , I had the right one CXL as soon as it was diagnosed in that eye as did not want to risk the same fate as my left.

[clarem]

Hi all, i just saw these replies, many thanks. Dalbeath, I'm very sorry to hear about your rapid KC progression. I will keep you posted how things go with me.

Well living aborad i have to wait and see if my health insurance company will pay for the lenses. i should know that on wednesday. If not they can cost around 600 pounds. I accept I may have to pay and will happily do so if it improves my sight but i am a bit worried that i wont be able to wear them as I previously wore normal SOFT CLS for 15 years and then had to stop three years ago because they just totally dried up my eyesd, it always felt like i had a film of smudgy dirt in front of my eyes. We shall see, perhaps hard lenses will be easier on my eyes in the long run.

On another note and I sorry for bringing up such a more heavy subject but does any one know if there is there any association between KC and multiple sclerosis?

Best wishes,

Clare

[longhoc]

Hi there Clare

Yes, there is some association between Keratoconus and autoimmune diseases. The good news with regards to your specific question on Multiple Sclerosis is that the association is quite weak. None of the studies which I've read can be considered ideal (they tend to have sample sizes which are too small to be able to capture "fat tail" probabilities with true accuracy and tend to have too limited follow-up times). But regardless, they all seem to come to similar conclusions so I'd say that it's possible to make some reasonably good deductions.

A typical published example is http://www.ncbi.nlm.nih.gov/pubmed/20802320

This lists the implicated related diseases for Keratoconus in a rough order of probable co-incidence. As the study shows, for Multiple Sclerosis, there's some correlation, but it isn't statistically significant. Which is excellent as it's really not something to be worried about.



Is there anything in particular which lead you to ask this question ?

Best wishes

Chris

[clarem]

Thanks Chris for this helpful information. I had been trying online to research but couldnt find too much. I ask simply because I had some symptoms last year which just returned this year which were a bit suspicious for ms. Last year when I had symptoms a simple MRI (no contrast) was done which was clear but since I have funny symptoms again at the mo Im again a little suspicious. Then came the sudden KC diagnosis and since I am not someone with any form of atopia, no known autoimmune illnesses and no one else in my family ever had KC I was wondering if it is random or could be linked to the other recent symptoms Ive had. But it if I understand correctly according to the statistics it is more likely to be random than associated to my other symptoms. I was just curious if I might find answers to other symptoms via the KC diagnosis.

Thanks again,

Clare