Researching a KC article...

[Emma_Marie]

Hi Lynn,

Well, i think that my story will be different to many, firstly because I am from a different generation and also the fact that i was diagnosed with KC in N. Ireland.

Since the age of three I have been under the care of many eye consultants. When i was little i had a squint in my eye and was referred to the the Ashbourne Eye Clinic in Co. Meath. I was given patches to wear to correct my vision over a period of two or three years. Following this i was prescribed glasses to correct my vision. At the age of eight i moved to NI and for five or so years my vision seemed to stabilise. It was not until I was thirteen and in my third year of grammar school that i began to notice any changes. I went for my usual eye test and all seemed well. However over the next six months my school work deteriorated and after a horrible parent teacher meeting mum marched me back to the opticians for another eye test.

It was at this stage that my optician told my mum that he suspected I had a condition called Keratoconus - i was told very little. He gave me a new prescription and told me to come back after three months to track any changes in my eye sight. After the three months my vision had yet again deteriorated and i was referred to the Royal Victoria Hospital in Belfast. It was confirmed that i did indeed have keratoconus and i was referred again to the Low Vision Clinic in the Altnagelvin Hospital. Here began the painful process of fitting contact lenses. My consultant was brilliant however and explained everything to me in detail - telling me that I wouldn't go blind and that i should be able to lead a normal life.

I was fortunate that my uncle also has KC and was able to expalin all the ins and outs of the condition - he has received two transplants - 1 which has since rejected. Thsi factor seemed to be of interest to the hospital and from what i'm aware there was some alliance between my consultant in Derry and my uncles in Dublin.

However after the initial diagnosis it was not the KC which had a traumatic impact on me but the reaction of my school. As a grammar school they had obvious high expectations and they did not take kindly to my grades slipping. I had serious problems trying to access handouts in text i could read and even had to change my A Level subjects due to the schools inability to provide me with adequate support. My GCSE German teacher told me that it was my fault if i failed my GCSEs after i complained that i couldn't see the handout to do my homework. I came out of that class with an A* at the end of the year. I really feel that much could be done for the younger generation of KC sufferers - schools especially need to realise that it can inhibit work and the student isn't to blame. Fortunately i found the KC support group immensly supportive during this time and they sent a letter outlining the condition to my school - that same letter i believe is the one on the website today.

It wasn't until i was 17 that i received contacts which i could actually wear so it was a long struggle. With the help of my fantastic optician though i have come through it much better. He constantly pushes to get the best treatment for me and is fully supportive of my needs.

At the moment i am studying at university and i really have to say that the difference in support is immense - i am treated as an equal as opposed to a complaining child looking for attention. I recieve extra time in my exams, a note taker and extended assignment deadlines - something that i am very grateful for.

With contacts i am able to live a normal life, i'm very fortunate that i receive my lenses free of charge from the hospital as i know many have to pay for the privilage. Both my consultant and my optician have been a fantastic support to me and made my diagnosis of KC much more bearable.

I hope this helps Lynn,

All the best,
Emma

[Lynn White]

Thank you!

All of this helps a lot!

Please keep the info coming though I am now off to Trinidad for 3 weeks and not sure I can get onlne there, so if I don't answer its not because I am ignoring people!

Lynn

[Andrew MacLean]

But, can you watch the footie on television? T and T isn't'out' of the competition, and may still progress.

Andrew

[Lynn White]

Ah well yes I can and whats more it will be street parties and various bachanal going on - a real carnival atmosphere - so looking forward to it!

[rosemary johnson]

Lynn asked if we'd prefer High Street v. hospital.

Oh, definitely!!!
Assuming, as you say Lynn, equal levels of expertise, and an acceptable level of facilities, give me a High Street every day.
Well, OK, maybe High Streets vary a lot. But certainly somewhere like I used to go to see Keith Nelson - where they were friendly and chatty, knew we were valued customers not nuisances who disrupted their lives by making them have to do some work (!), apologised and let us know what was happening if the traffic was awful and he'd got held up getting over from his other clinic to see me, rather than keeping us sitting in the dark for hours with no word. And had a nice, comfy and above all *light* waiting room to be sitting in meanwhile.
Vastly, vastly, vastly preferable to being herded about like sheep, keeping sitting inthe dark for hours, literally, regarded as inconveniences, andhaving staff being rude to us (if they'll consent to talk to you at all, rather than brushing past and ignoring you standing there saying "Excuse me?") - all of which the regular MEH experience, I've found!
(And I used to be an NHS union rep, and all...!_
Rosemary

[Andrew MacLean]

keeping sitting inthe dark for hours, literally, regarded as inconveniences, andhaving staff being rude to us (if they'll consent to talk to you at all, rather than brushing past and ignoring you standing there saying "Excuse me?") - all of which the regular MEH experience, I've found!
(And I used to be an NHS union rep, and all...!_
Rosemary

My experience of hospital optometry is quite different from that of Rosemary. My own experience could not hve been more positive. Given the choice I'd opt for hospital facilities every time.

Hospital optometrists are well experienced in fitting KC eyes, they know the full range of lens options that are available.

Andrew

[rosemary johnson]

keeping sitting inthe dark for hours, literally, regarded as inconveniences, andhaving staff being rude to us (if they'll consent to talk to you at all, rather than brushing past and ignoring you standing there saying "Excuse me?") - all of which the regular MEH experience, I've found!
(And I used to be an NHS union rep, and all...!_
Rosemary

My experience of hospital optometry is quite different from that of Rosemary. My own experience could not hve been more positive. Given the choice I'd opt for hospital facilities every time.

Hospital optometrists are well experienced in fitting KC eyes, they know the full range of lens options that are available.

Andrew

Oh, my experience is that *when* one finally gets to see the hospital optometrists, they do know what they are doing.
It is the sitting in the dark for hours (because of crappy, out-dated block-booked appointments "system", and having the admin staff herding youa bout and being rude that's the trouble.
Not to mention the "system" whereby it can take 7 months to get the lenses you piad for and shouldn't have had to pay for after all!
And Lynn did say assuming the High Street person had the same level of expertise.
Rosemary

[brigid downing]

My "high street" experience was excellent: Polite, helpful, available, knowledeable, informative, quick - but the lenses became very expensive.

the Hospital is slow and inpersonal; the admin staff can be rude and it takes ages to see anyone - but is cheaper, which compensates.

If my high street practice were able to deal with my case I would have stayed with them - inspite of the increasing cost - but my case is proving tricksy so I need the expertise of the Hospital. When I did finally get to see someone at the Hospital the were very good - they just "forgot" to order my lenses!

Brigid

[GarethB]

My high street optom was excellent and Mr Hanby told be straight that he would not be able to fit a lens because he did not have the experience in that area.

The hospital has been excellent too, we are all on first name terms and they take the time to do the job properly. When they pop out of their consulting rooms for stuff, they always appologise for the wait regardless if there is a wait or not.

[Louise]

I have known I've had problems with my sight from being as young as 3. I visited a local opticians from that age where at first I was treated for a lazy eye - ridiculous eye patches on glasses etc.

I continued wearing glasses from the age of 3 to 13 where I accidentally broke a pair. I could manage quite well without them and in 1993 aged 13 glasses really weren't the best things It wasn't until I was 16 and doing my GCSE's that I really started noticing I was struggling with my vision. I returned to my local optician but was told my vision had corrected itself and there would be no need for glasses. I tried to explain the the vision in my right eye (what they thought was lazy) was still quite poor, but was sent away without anything.

I continued this way until I started working in a government department aged 19. I was struggling with certain parts of the computer system, black lettering on a coloured background. I decided to try Boots opticians where they diagnosed an astigmatism. They explained it brilliantly and I was supplied with new glasses and even warned that they would take some getting used to.

It was then that I really noticed my vision had changed. Double vision with street signs, and bold lettering, halos and what can only be described as the light from streetlamps "smudging" underneath and no chance at all of seeing bus numbers etc.

It wasn't until my annual check up with Boots when I was 21 that Keratoconus was picked up. During a routine examination the Optician said I was giving contradicting answers and booked me in for a further appointment where he would put dialating drops in my eyes to examine them thouroughly. At this point the optician called the Contact Lens specialist in to consult and they referred me to my GP who in turn referred me to the RVI in Newcastle.

I have nothing but good things to say about my ongoing treatment at this hospital. They've discovered that although my vision is superior in my left eye, the KC is unfortunately worse for the past 2 years I have been struggling with RGP lenses. At the moment I have a smaller one for my right eye and a larger one for my left. The problem I have is that I can see the rim of both lenses. A new set (my seventh I believe) is currently on order so fingers crossed.

The lenses do improve my vision significantly, but they are bloody uncomfortable things