UK Keratoconus Self-Help and Support Association

Thought I would say hi.

My name is Lea, I am a final year student (26) and in Leeds (live here when not at uni as well) Since 1997 I have complained to my GP that my vision isn't that great, but was regularily told by whichever GP I saw, "Not my concern go to an optician", went to said Optician who decided "nothing wrong with your eyes, you are probably just tired"

Fast forward to about 3 years ago, new GP and went to see her with the same complaint but informed her that since initally complaining and being told to go away, I have been dx with Bipolar Disorder (which at moment is 4 years in remision) and a few other things, got a referal to the Community Eye Centre who spend the next 18 months sending my appointments only to then cancel with less than a hour, or do basic eye examinations and not send me any follow ups, or "accidently" (how this can happen 3x I would love to know) discharge me.

18 months ago woke up with yet another headache caused by daylight, so went to the GP and asked her to deal with the Eye Centre, got given a string of appointments as they apparently "lost" the results of the visual field test, so I asked them to check the machine as they claimed I was just saying I had had one, but yet I knew I had, they insisted I do another, so yes NHS I will...

In the last 6 months due to now being unable to clearly see more than 3" directly infront of me before fuzzyness appears and less than 2" either side of me, I was given a heap of blood tests, a CT scan which I was ment to have 100ml of dye infused but due to 15 years of severe self injury (nearly 4 years clean) a mass of severe tendan and nerve damage the dye woulnd't infuse and I was left feeling lkke I was being trampled upon by elephants, thankfully I have done a lot of self injury awareness over teh last 5 years to anywhere and everywehre and regularly on BBC Radio Leeds and tv, that I was able to let them know why my arm wasn't infusing and get it to stop.

Last Tuesday had I don't know the name of the test when what appeared to be a spiral flashing things went off to take coloured images of my eyes, my fiance is a nursing student and I am about to graduate in Social Care, so we both were a tad worried when we heard "not good, really not good". We asked what? and got told your consultant will have to explain.

Following day had to be back at the Community Eye Centre, and saw Consultant, who said he had a phone call from the hospital to go get the images and take them home with him so he could explain to me

Asked me to think over a contact lens but "doubts it will actually help you" or have transplants on both your cornea's" leaving me sat there muttering "no one is doing anything until I am back from my honey moon in mid september"

Spent the last week trying to write essays, revise for my finals as was informed by my personal tutor she was applying for mitigation and me not to have to take my exams but coursework to be counted, got messed about by GP's and finally yesterday got the letter I needed for uni out of them.

So yeah that is a brief overview, I am in too much pain to write any more as sat here in darkness apart from my pc monitor and the light is making me flinch.

Hope to learn more about KC from you all.

Anyone aware of any group inLeeds?

Lea
xox

Lea

Hello to you too; and thank you for sharing this with us. We are all glad that you are here.

I reset my monitor to "white on black". it means that photographs appear in negative, but it also means that I can work at my monitor without needing sunglasses!

Every good wish; let us know how you get on with your finals.

Andrew

Lea,

Welcome to the group and one thing you might find realy helpful is following the contacts page on the home page and register your details with the group. You will have access to literature the group has produced explaining the condition and we even have information for students so the Uni will probably find it very useful to.

It still happens that contact lenses are discounted straight away and recently I was contacted by a member thaning me for describing the type of lenses I wear. None of the considered main stream lenses worked for him and he was about to go for a graft until he read my story about Kerasoft 3 lenses. At the fitting he could get perfect vision and is now waiting to receive his lenses.

My advice would be to give lenses a try first, there is quite a variety and once you have proved to yourself and the proffesionals they don't work then you know the graft is the only option.

Take time to look at the group literature and the confrence DVD's as they contain a lot of information from members regarding coping strategies.

All the best.

Gareth

The main issue with lenses, is my arthritus ends up with me unable to grasp pens for long enough to hold pens often even just to sign my name, my dyspraxic tendances mean I go splat regularily or as my Fiance puts it "now what have you walked into", I get freaked out and need to take a Benzo before any tests on my eyes as end up worked up on edge, that I just want to curl up in a ball and rock.

I can remember around 2000-02 when friends were wearing coloured contacts with no rx in them, giving them a go and getting myself into total panics that I'd never end up with the lens in as it just wouldn't happen/

*sigh*

Lea
xox

ps I am bound to end up posting saying HELP soon.

I've been literally climbing the walls with optoms trying to put a lens in and os far only two have managed as I too have a fear of things in the eye.

When it's your opnly choice the fear can be overcome to a point, still go through the odd spell of optoms being unable to put a lens in so they just let me get on with it. It can take time but we manage.

Lea, welcome tothe group.
That's a really terrible story - all those messed appointments, duff advice, lost tests and everything.
Have you thought of making a complaint? - or talking to your MP aout your experiences. This is not the sort of NHS "service" he all pay our stamp for!
More immediately:
If you are worried about problems with dyspraxia and arthritis handling contact lenses, a graft will not (necessarily) be the answer to those.
Half the people who have grafts, I was told, end up wearing contact lenses after the graft 0 because the graft won't "cure" the eesight, just make a more regular shape to correct with lenses or glasses (well, that's the idea).
You'll also have a lot of eye drops to put in, and those can be fiddly too. Also - not wishing to bepersonally intrusive - but maybe you'd need to consider how all the medications and possible anaesthetics might interact with your other health iddues and any other meds you're on.
As regards lenses:
I zgree some of them can look very tiny, fiddly and delicate. If that might be a problem, you could think about sclerals.
You'll have a fit when you firt see them - they're an inch across!!!!! But they do go in , and some of us do very well in them. And because they are that size, they are also more robust, much harder to break or lose. I've worn them for, ahem! about 34 years and not broken one yet and I'm pretty hamfisted and butter-fingered.
As regards freaking out at the thought of putting things into our eyes - I think we all had that when we started with lenses! When I got my first set, I couldn't get them in at all - got so far then just couldn't do it. They had to teach mum to put them in and take them out for me before they could let me go home with them.
Any chance you could get your fiance to learn how to put lenses in for you? - I promise you (and him) that if they work and really do give good vision, you'll get the hang of them going in and out.
Meanwhile, has anyone yet mentioned to you either CXL or Intacs? (there is info about both these on this site home page) It maybe if no-one has diagnosed the KC for what sounds like far too long that it is too late for these, but they should at least be able to explain this.
I hope you are now in the right hands, by the way, and the consultant can provide good care now. i would why you're not going to a "proper" hospital eye department?
Best of wishes with keeping the bipolar disorder under control while you get the eyes sorted out. It sounds like, after all you've been through, and however much of a shock the diagnosis was, at least knowing what the problem is must be a step inthe right direction.
Do keep us posted with how it goes.
Rosemary

I have had so much meh this last semester that I don't actually know how I have managed to average 79% for every essay that has been set, other than "when under pressure eat benzo's a lot". Last accademic year my average grade was 60%, but this year I seem to be stressing like hell and a crying mess and doing much better with my work.

My Gramps who for 26 years, and when I spoke to him for the last time 4 hours before he passed away on Dec 25th promised me that he will dance with me at my wedding in August, would be unimpressed if I was to give in and destroy the life I have tried my hardest to enable myself to have as actually enjoy life as aposed to for years messing up and hating my life.

I have been crying a few times a day since he passed away, but know he is with my Grandma so that makes me happy as she passed away in 97, I close my eyes and clearly (without stupid fuzzyness and stinging etc getting in my way, see the two of them at their best, having fun, on holiday or at home cooking and making me laugh, no bad memories of either of them, only good so hope that they are ensuring the NHS no longer attempts to mess me about with appointments.

I am rambling (can you tell I should be doing uni work?!?) but can't concentrate as watched all of a hours worth of tv earlier on, well I say watched but listened to more of it, as the living room light was annoying me so yet again my poor Fiance had to watch tv in the dark.

Lea
xox
ps you are all awesome adn the advice and information within this forum has enabled me to less alone and finally know I am not the only person expereincing this so a HUGE THANK YOU x

re drops, I will no doubt fidget around and squirm a lot but they will go with less trauma to myself and my mental health than the thought of contacts on daily basis.

I have a lot of general anesthetics in the past due to the damage I was doing and at the time not caringa bout when I was self injuring, most of my "loony toon and cripple (self defining terms I use for myself a lot) meds, well I say most, I don't take the stupidly ill thought out combinations I was on years ago, so fingers x anesthetics will do no more than the side effect I used to get of coming around and being hysterical and just wanting my Grandma to calm me down. I now have the song "anesthatists hymn buy The Amature Transplants aka Adam Kay and Simmon Biswas who are lecturers at UCL for medicne but release songs that are to the tune of something you wouldof heard before but with amusing lyrics.

Leaxox