UK Keratoconus Self-Help and Support Association

Greetings everyone. I've only JUST started looking up keratoconus on the net! Based in London and I've had keratoconus for over 13 years (I'm 29 now). Back then, my local eye unit had never seen anyone with the condition before, which goes some way to demonstrating its rarity! I had cornea graphs done in both eyes but the condition has persisted to this day. I also have almost every allergy going: chronic eczema, asthma, hayfever, dry eyes, all of which no doubt contribute to KC. Wearing contact lenses now although the comfort is sporadic - some days fine, other days immense pain, watering, discharge, whathaveyou (I'm sure you're all familiar with this). My eczema and dry eyes usually mean I'm rubbing my itchy eyes constantly.

I liken my natural vision is of vast starburst flare. When looking at a point of light, my left eye is a thick triangular flare, the right resembling a map of the United States! Together it resembles kind of distorted butterfly wings. With the eczema, depression, difficulty with the lenses and the sheer intolerable degree of one's natrual eyesight, as you can imagine, it's proving more and more difficult to cope with absolutey everything in life.

I've not gotten on well with so many eye doctors largely due to my depression and frustration with KC. I am never the wiser after eye appointments because there is not one eye doctor who understands the phrase "layman's terms" when explaining the condition. So much so that my frustration has lead to me to miss appointments or chase up other London hospitals for opinions (I was attending 4 different hospital eye departments at one point). The main suggestion for tackling the natural vision (as I don't know how much longer I can carry on with contacts) is surgically implanted lenses. Eye doctors are completely divided over this: some think its the way to go, others would not recommend it. Any thoughts?

I went to see my opthalmologist last Thursday. While there I signed the papers to enable him to register me as partially sighted, and I agreed to go ahead with arrangements for a cornea graft in my right eye (the more coned of my two eyes; they are confident that they can still help my left eye with a contact lens).
The consultant was great. I had a load of questions, but he had dealt with most of them before I got round to asking. He then let me go back to the waiting room (twice) to let me gather my thoughts. On my third visit to his room we agreed to go forward.
I am so grateful to this site for helping me to sort out the issues ahead of this meeting with the consultant, and to him for the time he took enabling me to be sure that I was giving informed consent.
Andrew MacLean

to SueB of Herts
Sue, the missing circle you describe is exactly what I get as a mini migraine aura.
I'm not a KC person myself but do have crummy eyesight!!- irrelevant!
I dont have migraines when i have the aura, but i do get the aura at a time when I might reasonably expect a headache eg if I havent eaten for ages, hot day with not enough cups of tea, school trips, management encounters ...
sometimes the blank patch floats about, sometimes has pretty sparkly edges. Lasts few minutes, I find I'm rather fascinated by it now my GP has assured me I'm not losing my retina or my marbles!! NIce in amnagement meetings I can manoevre the blank to cover the boss's face!!
I can dispel it by drinking a pint of sugary tea and calming down.
Do you think there's a connection ?!
KateF xx

to Matt
do you go to Moorfields ?
Dr Ken is a very good person, thoughtful, explains and gives time and is just a really nice guy who has all the skills and knowledge.
So much so that he has developed better lenses himself. Scleral cntacts (24mm diam.)
Are scleral contacts a possibility for you then?
Quite a few KC people have a mix of other reactivities - my son has advanced KC + skin problems and you cant say if the eyerubbing triggered the KC or the KC triggered the rubbing !!
good luck
keep writing in and loads of friendly people will find answers to your every question !
KateF

Hello Kate.
Actually no, Moorfields is the one hospital I HAVEN'T been to yet, believe it or not! (Sutton, Croydon Mayday, St. Helier, St. George's - certainly done the rest of the circuit). Thanks for the recommendation and I may well chase him up for an appointment (yet another opinion!). I'm due back at St. George's on Thursday for a follow-up with a doctor whose name escapes me and is definately of the upper-class fuddy-duddy type and conveys little compassion and IS up for the surgically implanted lenses option. We'll see what gets achieved THIS time. At least now, after finding this and other sites, I can arm myself for a better discussion about the condition than ever before.

Dear Matt, It would definitely be worth trying to get into Moorfields as they have the most expertise in the country regarding KC and they do have the time for you. And if you have not had scleral lenses suggested to you as an option then they are definitely worth a try; much more comfortable than corneal lenses, don't fall out and you can't get any dust behind them!

I believe you have to be referred to Moorfields via your GP. Good luck and let us know how you get on. SUE

Hi

Can any scleral wearers help me please. I have just had a check up with my Optometrist and have been told that I have got blood vessels growing into both corneas due to lack of oxygen. The only advice that he could give me was to reduce my wearing time. I am going to find this difficult because I have awful vision in glasses and cant tolerate corneal lenses. I thought that the sclerals were meant to have really good gas permeability nowadays.

Has anyone else had this problem and how have you dealt with it? By the way I have just found this site, and think its great, I have had KC for years and never knew such a group existed, until I saw a flyer up in my hospital waiting room.

Thanks
Jeannie

Hello Janet,

I totally forgot to keep everyone updated about my "scare". Well, it is indeed a rejection episode, though not as bad as the first one last year. I had four clusters of white blood cells under the cornea, which I thought sounded OK, until I was told that their job is to destroy foreign tissue - including my nice new cornea.

I'm on Hypromellose drops and FML 4 times a day. Maxidex would have been a better steroid to use, but unfortunately, I have side-effects with it (high eye pressure) so my consultant is trying to keep me off that if she can.

As for the other eye, I'm gradually increasing the scleral wearing time, and I'm now up to about 6 hours a day. Hopefully I'll be able to wear it to work soon.

John

Hi Matt,
It gave me quite a turm seeing your name and message come up above mine the other day, as I have a grown up son called Matt!!
I can relate only too well to all your problems as I have the same range of delightful aggravations.

18 months ago I looked like a red panda with eczema around my eyes and was barely able to tolerate my lenses for 2-3 hours a day, at a time when I was writing a dissertation. I finally went to see a Chinese doctor (GP trained in this country and also practises Chinese herbal medicine and acupuncture) in Oxford. He treated me with herbs for 6 months and the eczema went and has not returned.

During the hay fever season I use a homeopathic preparation called Euphrasia mother tincture to sooth the itching in my eyes. It also calms down the allergic reaction and running eyes. I put 2-3 drops of Euphrasia in an eye bath of cooled boiled water and bathe each eye. You should never use this tincture without diluting it!! It's best to use a fresh eye bath of solution for each eye to avoid possible cross infection. I carry a small bottle of boiled water with me when I go out at this time of year so that I can use the eye bath anywhere. This is also good for conjunctivitis and itching at any time.

You can order Euphrasia mother tincture from Galen Homeopathics on 01305 263996. You will get an answer machine, so be ready to give your name and address and to ask for a 10 ml dropper bottle of Euphrasis mother tincture. They will post it with an invoice - will cost about £4 or £5.

If you would like details of the Dr I saw in Oxford, please mail me on janetmanning@lineone.net

You have to be very careful with Chinese medicine practitioners and the creams they dispense. I was given cream for my eczema by a Korean guy in Kingston upon Thames, where I used to live. He swore it contained no steroid, but when I showed it to the Doc in Oxford he was very wary, because it was white in colour. He took it with him on his next lecture tour to Beijing and rang up the licensing company for the cream. They sent him a copy of the manufacturing licence, which showed that it contained a steroid.

What my Oxford Doc recommended was Vaseline for around my eyes. I was very sceptical at first, but it really worked. You just have to be careful to avoid getting it actually in your eyes.

These treatments have made a huge difference to me and allow me to wear my lenses for longer periods in comfort and to lead a more normal life.

Hope this will be of some help to you and anyone else who is coping with the same problems.

Janet

Hi John,
Sorry it's a rejection episode and hope you're making progress now. I had the same problem with Maxidex - eye pressure went up to 46 and even the doctors panicked. I was given a glass of water and tablets to take right there in outpatients. I was put on another steroid drop beginning with V, but cannot remember the full name. Very expensive, which is maybe why you haven't been given it!

I wish I knew what causes these rejections. Mine occured after a family trauma - my Dad almost died - and I put it down to that, but who knows?

Hope you'll soon be able to report that all is now stable again.
Good luck, Janet