Keratoconus

[Aproductofmyera80s]

DS16 has an appointment tomorrow at the eye hospital because the optician believed he may have something called Keratoconus, I’ve never heard of it, read on Wikipedia but looks to much medical jargon for me, just wondering if anyone can tell us what to expect if he does have it, and what they do to check.?

Hi, my DS was diagnosed with this and has subsequently had an operation called "cross linking". Both eyes have been operated on about 2 years apart. Keratoconus is a thinning of the cornea which makes the cornea lose its shape, and become more cone like, causing blurry vision. The operation itself is quite unpleasant and painful but is absolutely essential if advised. Left, keratoconus can make your eyes sight incredibly poor. The operations have both been successful although DS does have to wear glasses for driving and for computer work.
Cross linking is the gold standard for this condition and DS was incredibly fortunate in that our local eye hospital offered this. There is an optimum window for the operation - condition has to be bad enough for the operation but not too bad to render an operation pointless. Can't fault the NHS for his care though.

Forgot to say, it's diagnosed by lots of scans at hospital. Take readings of cornea shape etc.

My 9 year old recently had an appointment to check for keratoconus although they said she doesn’t have it. The appointment itself was all fairly straightforward - they checked pressure in her eyes and then she had a corneal scan done which was basically looking into a machine. Nothing painful or even uncomfortable. Hope it goes well

One of my relatives has this. Apparently caused or at least worsened by a lot of rubbing of itchy eyes as a kid

I have keratoconus, I was diagnosed at about 23 which is late, most people are diagnosed in their teens.

I'm lucky that mine has progressed slowly and is now pretty stable. I have the scan at the hospital every year and they are happy with the results.

I do have a really high prescription for my glasses and the optician always finds it hard to get the prescription right. I've been told hard contact lenses would give me better vision in my bad eye but I'm still fine with glasses.

The only real problem I have is with night vision and the halos around lights.

DS has bad hay fever which means he’s been rubbing his eyes for years. Maybe this has caused it 🫣

I have it. My mum had it. One of my daughters has it. All to varying degrees.

It didn't have any impact on my mum's life, and my daughter wears glasses but can manage without. Oddly she wasn't diagnosed until her late twenties and only has it in one eye, but it isn't progressing so all good.

On the other hand I was diagnosed when I was seventeen and it progressed rapidly. After years of struggling with the pain of badly fitting GP contacts I had a corneal graft in 1992, and another in 1996. Both are healthy and still going strong. I feel very lucky. The biggest negative impact on my life has been that I can't drive which has been quite restrictive. Sometimes my sight has been good enough to drive but other times it hasn't so I never have. I don't see too well at the moment but I'm developing cataracts. I'm in my early sixties so have the whole needing reading glasses etc going against me now too. But it is okay, I just get on with it.

Personally I think the most important/useful thing a newly diagnosed person should have done is corneal topography to monitor progression, or hopefully stability. Read up about cross linking too, and also about the different contact lenses that are now available. Treatments and lenses are constantly improving.