Just been told I have Keratoconus

[Laura257]

Hello,

I'm 24 and have just been told I have Keratoconus in my right eye at my latest eye test. I have been wearing glasses to correct short-sightedness for the last 5 years and hadn't noticed my eyesight getting worse in my right eye. I was given a new prescription and got new glasses.

My glasses arrived and the prescription is not right. if I close my left eye, even with the new, stronger prescription, my vision is blurry in the right eye.

Is this do to with my Keratoconus?

I have made another appointment for a second eye test to see if the optician has made a mistake. I have also been referred to a hospital (I am not sure what for) but am not likely to get my appointment for about 2-3 months apparently.

Everything seems to be a bit unclear, the optician didn't explain why I need to be seen at the hospital and I've been left feeling quite worried.

When I go for my next eye test is there anything in particular I need to tell the optician (apart from my diagnosis)? Somehow telling him I can read the letters better/worse has still resulted in me not being able to see properly.

Thanks in advance for any advice, I am still struggling to understand what's going on.

[Lia Williams]

Hello Laura,

Welcome to the forum

My glasses arrived and the prescription is not right. if I close my left eye, even with the new, stronger prescription, my vision is blurry in the right eye.
Is this do to with my Keratoconus?

Yes, it probably is the keratoconus that is causing the blurry vision. Keratoconus causes an irregular astigmatism which unlike regular astigmatism can't always be corrected with glasses. Typically people complain of ghosting and multiple images. I've often replied to an optician that I can read a particular line on the chart but I can also see lots of ghost letters. This ghosting means that the vision is still blurry.

Most people with keratoconus wear specialist contact lenses to correct their vision. Keratoconus is an eye condition where vision is better with glasses than contact lenses. However glasses do have their uses especially for people, like me, who are also very short sighted. I wear my glasses in the morning before I put my lenses in.

The appointment at the hospital is probably to confirm the diagnosis of keratoconus. The hospital may monitor your eyes to see if the keratconus is progressing and if so whether or not cross linking would be beneficial. You may also be referred for contact lenses or you might be able to continue with your glasses.

Although it can be quite upsetting to discover that something is wrong with your eyes - especially when it is a condition that no one has heard of. Please don't worry.

Lia

[Loopy-Lou]

Use us for support Laura, folk here have so much experience and knowledge

[Laura257]

Thank you for your responses!

I am quite concerned as to why my optician has allowed me to spend money on new glasses when they do not correct my vision?

I don't want contact lenses, I find them intolerable

Really feeling very sad about the whole thing.

[Loopy-Lou]

If the glasses precription cannot be changed to correct your vision they should refund your money.
Have you ever tried contact lenses Laura? There are more types available for Keratoconus from the hospital optometry, but understand the prospect can feel daunting.
((hug))

[Lia Williams]

I am quite concerned as to why my optician has allowed me to spend money on new glasses when they do not correct my vision?

Although contact lenses will probably give you better vision than your glasses do, it's always useful to have a pair of back up glasses for when you contact lenses can't be worn, especially if your unaided vision is poor.

I don't want contact lenses, I find them intolerable

There are lots of different types of contact lenses so hopefully they'll be able to find a pair you can tolerate and correct your vision.

Lia

[Matt_Offord]

I found that I could not tolerate lenses, it was a real issue because glasses simply do not correct keratoconous in a number of cases (including mine). So contact lenses become the only real possibility even after a graft. However, I found that piggy-backing a hard lens on a soft one solved this problem beautifully. It was like night and day. It is an effect that has the optometrists baffled apparently, as the issue of contact lens intolerance is supposed to be based on their effect on the eye-lid. Piggy backing should make no difference to this. But for some of us, piggy backing is the only way. I don't know if this helps but it could be an option for you. I wear glasses at night when I have had my lenses in for long enough but my eyesight with glasses is not much better than without.

[Gabs2016]

Hello,

I know how you feel! I was diganosed at the age of 14 (I am now nearly 25), I had severe Keratoconus in my right eye and moderate in my left. I was really worried (as were my mum and dad!) and I was immediately referred to the NHS for scans, topographys etc. I was given RGPS lenses that were absolutely horrific and I tried to cope for 2 years.

I was basically told I should come back when I needed a cornea transplant! Desperate to not go through that my mum and dad contacted a private practice in Harley street that were highly recommended with Keratoconic patients. We were told about CXL (this was during a time that the NHS did not provide it and it was only a trial, I had to be 18 but was only 16 at the time).

I had the CXL done on my right eye first (this was put throuch quickly as I was at the point of my cornea collapsing and it was thinning rapidly). It has worked wonders on my left eye and has improved massivley I know only wear a standard soft lens. I have more trouble with my right, having to trial lots of different types of lenses. I will say that by having CXL I have not progressed in nearly 8 years, this could change for me, but it has made a huge difference to not having to think about a corneal graft yet.

Hope this helps - remember there are lots of options to look into!

Gabriela