UK Keratoconus Self-Help and Support Association

Hello all,

I am the Mother of an 18 year old son who was last week diagnosed with Keratoconus. David has had problems with his eys for a few years now but we never suspected this. To be quite honest until last week I had never heard of this condition. I am learning quickly.

David has the added complication of also having Aspergers Syndrome, which is a form of autism. Although David is highly academic the autism impacts on every one of his senses.

David has been refered to our Eye Hospital and I would like to know what to expect from this visit. This is something else, which is important to David he needs to know what is happening, when, where and why? His cyl is 6.75 and I have been told that this means that the Kerataconus is quite advanced. Is this correct?

I know from my experience as a Mum to two sons with autism that the best people to ask for advice are the people with the condition and that is why I am here.

I would also like to know if there is anyone in in the group, or if anyone else knows of anyone with Kerataconus and autism? I am told it can be an allergy induced condtion and as a family we have many allergies and there is also a huge link between autsim and allergies so I am very interested.

Sorry I have so many questions.

Carole

Hi Carole,

Welcome to the forum and I am sure there is someone else here with a sone with the same autistic condition. Is Aspergers syndrome where you are more sensitive to your surroundings such as hightend senses regarding being touched, hearing things?

As far as the hospital visit goes, pen and paper is handy to avoid information over load, a dictaphone may be useful too.

The optomotrist will do a normal eye test and will then use a slit lamp to look at your sons eye. He will be asked to rest his chin on a support and the optom uses a microscope to observe the cornea and general health of the eye. The light appears bright to me as I am light sensitive too, so this might be something to make your son aware of. An eye stain is used to make it easire to see the surface of the eye. These are fluorosene, a little paper stick which is wetted and dabbed onto the corner of the eye and the tears do the rest. We get used to having yellow eye shadow after treatment. I know with some people it stings a little at first, but I find it just a bit cld for a fraction of a second.

The eye pressure may be taken which does feel a little odd, and my optom has to hold my top eye lid up to stop me blinking. That is because I have a phobia of things being in or near my eye so wearing contact lens is my worst nightmare come true. A little gadget is put very close to the air and I think it justs puffs a bit of air to the eye.

There is also another gadget used where you rest your chin on a stand and look at a coloured light and a computer models the curvature of the eye. This helps to decide if contact lenses are required.

In mild cases of KC, it can be treated with glasses and the KC can settle as quick as it starts. More advanced cases require contact lenses of hich there are many, corneals, Rose K corneals, soft perms, kerasoft, mini scleral, scleral etc.

In extreme cases a corneal graft amy be necessary, but that is only 10 - 20 % of cases. There is a broad range of experiences here in the group but I am unsure how representative we are of the general KC population.

Hope this helps.

Regards

Gareth

Hi to Carole - and David. Welcome to the group and commiserations on the KC diagnosis.

Where to start? Well, KC and allergies tend to go hand in hand, but I don't think there is any proven causal link.
That is, many people with KC also have hay fever, asthma, eczema, etc, but as far as I know, no-one has proved the KC is caused by the allergies.
They certainly do think there is a genetic link, but a trigger factor is also necessary, though there's still various theories about what the triggers can be.
I'm allergic to all sorts of airborne pollutants, such as chemical solvents, petrol fumes, cigarette smoke, general poor air quality.... also horses and cats which is terrible cos I love them both!

What to expect at hospital?
First of all - probably lots of waiting about for ages doing nothing much, so do make sure you bring plenty of things to do sitting around in the waiting room. Also be aware that many eye hospitals have their waiting rooms very poorly lit, so you have to sit around for ages waiting in a place where it is too dark for people with poor "night vision" typical in KC to be able to read a book comfortably!
When you finally get called, you can expect:
- normal type eye tests, of being asked how many letters you can read on the chart, how many fingers is the practitioner holding up, can you see my hand moving about, and trying the same with different powered lenses, or a black disk with a pinhole in it, held in front of the eyes.
- being asked to sit on a stool in front of a big machine like binoculars mounted horizontally on a moving table top. The patient then rests their head against the head rests (the table top can normally be adjusted to their height) and look straight ahead, up, down, left, right, while the practitioner peers at their eyes down the binocular things. Thye have white and blue lights to illuminate your eyes = sometimes these can be very bright and uncomfortable - sometimes theywill turn them down a bit.
Some people find it hard to keep their eyes open with the bright lights shining and tend to blink. SOme of the practitioners then lift their eyelids up with their finger to keep the eye open so they can get a good look. If this is likely to upset David, warn the practitioner not to, and get him doing it himself if necessary (note@ there's a technique to this; look right down so the eyelid lowers, put one fingertip gently on it about 2/3rds of way to outer edge, then look up and raise finger gently into eyebrow at same time).
- similar with lots of different machines.
- having the tears stained orange so things show up better down the machines. This is done by getting a little strip with an impregnated end, dipping it in saline, then dabbing it to the eye, typically under the eyelid. It doesn't hurt, does look a bit odd for a while, but the tears will soon wash it away (bring some tissues to blow the orange stuff out of the nose later).
If David's very touch-sensitive .... well i've never tried to put it in myself, but I suppose it would be possible. Tip for learning to do things to one's own eyes; look in mirror, and stare hard at mirror image, to avoid looking at something coming closer to the eye!
- if they want to put anything in the eyes (drops, I mean) *ask what it is* - they might want to use something else, but should say what and its effects first (I once had a nurse at Moorfields approach with a dropper and say "Look down", and it was only because I thought to ask "is that the orange dye?" that she actually told me this was the pupil-dilating stuff that would have made it hard to painful getting home and impossible to work that afternoon. Boy, she'd have been in trouble!!!!!

At some stage, you may well get to the stage of being tried with different types and sizes of contact lenses. I don't know if this is likely to be the first appointment.
Don't let anyone tell you someone with Asperger's will never cope with contacts!
Good luck! - do keep coming back here and asking questions.
Rosemary

Hi Carole

Further to what G and R have said...

the cyl that he has is difficult to say whether the KC is advanced..and I am surprised they said that JUST from that (so I am assuming they didnt).

The best way to determine how advanced the KC is, is to have a Corneal Topgraphy performed which will bascailly map the cornea and measure its curvature, steepness and irregularaty

Hope that helps!

Hey Carole Congratulations on discovering the forum in the early stages of your walk with KC. And, hello David.

I guess the detail given by Resemary answers most of your questions. But it is important for David to know that he is not alone. In fact there are thousands of us living with KC.

Whatever lies ahead for David this is a pretty good place to sound off.

All the best

Andrew

GarethB wrote: We get used to having yellow eye shadow after treatment.

Hadn't read this before Gareth, this is totally unrelated and made me laugh as it reminded me of a day many years ago that I had my annual checkup at Taunton Hospital.

Quite forgot to go and check that the yellow stuff had been wiped away, and went off happily to see some clients - I was a sales rep at the time!

I looked like something from the Rocky Horror Picture Show and what people thought I dont know. It wasn't until after I got back into the car after the 4th or 5th call that I noticed the yellow streaks running down my face...and do you know, no-one had been brave enough to tell me.

It still makes me cringe to this day, but also howl with laughter!!!

Paul,

I have only had one customer brave enough to coment on something I had done. Not KC related, but I am dyslexic and to confirm what had been discussed in a meeting I wrote 'Thank you for seeing me toady'.

Being dyslexic that looks fine to me, what I meant to write was 'Thank you for seeing me to day'

He was most apologetic once I explained I was dyslexic and he was then my best customer and is now a good friend.

Hello all

Well I get around remembering the yellow dye by my little boy calling me 'monster eyes' in his loudest voice.

And of course at the eye clinic for my first 12 months or so of visits my optom warned me not to go straight to the disco from seeing him. Several years on he now offers to rinse the lenses off for me just in case of course.

Quite funny how spooky light up sclerals can look.

Susan

Hey ho! since we are all exchanging 'yellow die' stories, let me share mine. Actually I always liked the way the world looked through the ocre tint of the yellow die, but like others, I had no impression of how a face smeared with luminous tears would appear to the rest of the world.

I was a University Chaplain, and went direct from a clinic to conduct a Graduation Service. After the service, and before the Graduation ceremony itself, the Chancellor took me on one side and asked if there was something upsetting me. I answerd 'no'. 'Maybe you ought to go to look in a mirror' was his response.

A senior academic overheard and fished in her bag to produce her little mirror. When I saw how odd I looked I began to chuckle, but managed to explain in the midst of increasing (almost hysterical) laughter that I had been to an eye clinic, and that they put this stuff in my eyes to make them glow under UV light.

We were all a bit stressed ahead of the procession and ceremony, but the recallection of this chaplain's face smeared with luminescence hit a note with the great and the good!

Use for the fluorescin dye - I've long thought it ould be just *the* thing for the bit at the end of Don Giovanni (Mozart opera, thatis) where the statu of the man D.G. murdered comes to "life" and turns up at his dinner party to drag him down to hell.
Rosemary