Quicktopic posts: Feb 2003

[Deborah]

Helen
Yes KC is usually diagnosed in puberty but -

My daughter was diagnosed at 4 years old with no family history of problems except that I have always had double vision.

I have taken all 3 of my children to the optician every 6 months from birth.
Regards

[Sue Ingram]

Hi Anne-Marie (1378), You mentioned that you are not wearing a lens in your KC eye due to experiencing problems. Can I just ask, were these problems with rgp corneal lenses? If so, have you ever tried scleral lenses? I had problems with corneal lenses after over 20 years of wear - my eyes would just not tolerate them anymore. I now wear scleral lenses which are a bit scary to start with, but are 100% more comfortable than corneal lenses. I don't know why noone suggested them to me earlier!

There is info on scleral lenses on the KC Group website http://www.kerataconus-group.org.uk but if you would like further help or advice, please do not hesitate to contact me on sue.ingram@virgin.net.

Its just a thought - if you are struggling with your KC eye and you have not tried scleral lenses, then they might be the answer for you. Take care. SUE

[Robert]

I have keratoconus on both eyes and currently getting NHS treatment. Iam planning to move abroad permanently in the next month or so. I understand that NHS treatment ceases; however, does anyone know whether it is possible to carry one with the same hospital and consultants but in a private capacity or will this treatment simply stop and you have to find some one else abroad.

[Dave]

Hi Guys,
As a new member to teh KC 'CLUB' it is comforting to read others thoughts and experiences.
I visted my local hospital last week and was diaognosed with KC, but the consultant referred me back to my optician for RGP lenses to be fitted. He said to only return to him if these were unsuccessful and we would then discuss a transplant?
Anyway, waiting to go to optician but have a worry that I only noticed this week. I have noticed that in my KC eye I always can see faint 'stars' and flashes of light in my eye, more noticible when looking at white walls?
Any ideas as this is concerning me along with an increase in the number of floaters in the same eye.

Keep up the good work folks!!

Regards,
Dave.

[Jonathan Stokes]

Dave


The visual sensation of flashing lights along with an increase in floaters is indicative of a vitreous detachment. That is, the gel (vitreous) within the eye is becoming more fluid and the membrane that attaches the gel to the retina at the back of the eye is peeling away. This is a common occurrence in short sighted people and basically anyone as they get older, and on its own a vitreous detachment is of little concern(it has no links with KC). However occasionally as the gel gradually peels away, it tugs on the retina and causes the sensation of flashing lights, this tugging can lead to the formation of a retinal tear or hole and this can lead to the retina becoming detached, a far more serious condition altogether. So you say you always have had flashing lights? If you are aware of a recent onset, regular sensation of flashing lights, and you are noticing a definite increase in the number of floaters (this is just a sign that the gel inside your eye is becoming more fluid and more mobile) then you need to see an optician or your local eye casualty tomorrow. They will simply dilate your pupils and have a good look at the retina to make sure there is no sign of any damage. Ok. Good luck.
Jon













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[Nessa]

Hi,
Just an update, My husbands last blood tests were not good, white blood cell count was way off what it should be and we were called to the hospital to the Uveitus clinic so they could change his meds. Now we know why he has been so ill, no energy...sick all the time..any smallest cold feeling like he has the flu..acheing bones.....most of his time spent in bed asleep....ect ect. They have put him on a different Ant-rejection medication, its not supposed to have as many side affects, so we hope he starts to feel a bit more healthy soon.
One good thing though, his eye is looking ok still at the moment......5 months after the op.....longest he has gone so far.
Hope everyone is doing well,
Nessa

[Rob Armstrong]

Hi, I have been to your site several times, but this is the first time I have posted a message. I was diagnosed with Keratoconus in both eyes aged 17/18. Less than a year later, glasses were no longer effective, and the hospital I was by now attending recommended gas permeable contact lenses. I remember how daunting that seemed at first, I was in agony the first time I tried them! But I still remember thinking "WOW!" as I looked through the tears at that eye sight test chart. Its funny, you almost forget what things are supposed to look like. To be honest, I hated my lenses, and only wore them when absolutely necessary. (At the time I still had the luxury of being able to cope without them, even if I had to constantly screw up my eyes).

As time rolled by, things rapidly progressed, until I was being prescribed new lenses at almost every hospital visit, approx. every 4-8 weeks (I was at the clinic so often, I realised I knew the first five lines of the chart, A, O E, H L A.....)

Unfortunately that pace couldn`t continue forever, and around the end of 2001, it became increasingly difficult to fit my right eye with a lens. By now I was in my final year at Uni, studying Product Design. I had been struggling for some time, and was constantly behind. Even with my lenses in I still had difficulty doing detailed work. Using the computer did allow me to "zoom" in on my work, and I knew where all the buttons/menus were, but as you probably all know, the nature of Keratoconus means that enlarging an image doesn`t necessarily make it clear-the multiple edges/images and the distortions caused by the irregular cornea remain.

By April/May 2002, I was told that my right eye was no longer suitable for wearing a contact lens. Suddenly being down to one eye made a surprising impact on what I was able to do, and I had to admit defeat and put my studies on hold.

By June/July I was on the waiting list for a corneal graft, but had no idea when that would be. Meantime I stubbornly did my best to carry on as normal, wearing my remaining lens for several hours almost daily. However I soon noticed everyday tasks becoming more troublesome, especially at the times I wasn`t wearing my lens. Things such as pouring milk on my cereal, shaving, even looking at my watch-the list grew and grew. It's the way it creeps up on you, you don`t always realise just how poor your vision is becoming. It took several experiences to really put me in my place, some not so serious, e.g. bumping into friends and family and not having a clue who they were, or having to literally have my nose upto my phone, computer, or a letter to read them. However, others were not so harmless...

A neighbour asked if I could move a large plant pot through the house for her, I didn`t spot the step down into the kitchen, and ended up in casualty. It could easily have been a lot worse, and that experience really shook me up, but I stubbornly tried to carry on as normal. Then one day, I ran out of solutions and had to dash to the opticians without my lens in (a short walk to the high street which I must have done hundreds of times). It was starting to go dark, and to my horror I realised I couldn`t see the cars coming, the few that had lights on hurt my eyes with the glare. That gave me a fright, it was a wake up call. I already knew I had difficulties finding my way around unfamiliar places, but this was on home ground.

I lost the confidence to go out on my own, and as such went out less and less.
This loss of independence really got me down, and I couldn`t wait to have the operation, yet at the same time I was dreading it.

On the 8th of January I got my new cornea, 5 weeks on and so far the results are VERY promising. However I have been warned that it is still only early days. Hopefully in a couple of weeks I can stop wearing the eye patch at night, and start getting back to normal (I can`t wait to get my hair cut!) I`ve only been out of the house a few times, mostly to go to the hospital, but I`m getting my confidence back.

I`m still wearing a contact lens in my left eye, but its only a matter of time before it too will require surgery. But after years of going to the hospital, only to be told I`m getting worse, It's the most amazing feeling to suddenly be told my vision is improving beyond expecations.
Lets just hope it keeps up!

I didn`t plan for that message to be so long, but I just wanted to add that inspired by the apparent lack of images on the internet, I have been taking photos of my eye each week since the operation. Obviously I was in too much discomfort to do so at first, and the first couple of attempts weren`t very clear, but I`ve managed to get some decent pictures. Would they be any use to anyone on the site?

Keep up the good work!

Rob

[Nessa]

Rob
Your story is almost identical to that of my husbands, it was like reading about his life. And the parts you said about not realising and admitting to yourself how bad things were getting and the fact that you were going out less and less, thats him down to a tee. I used to get angry because he wouldn't go outwith me...eg invitations to parties special occasions ect. But i do understand a lot more now. A funny thing though occured to me the other day, we decorated our hall way about a year ago and he helped me chose the colours and at the time i thought ewww the colours are so strong and bright then whilst he was recovering from the op, i decorated our living room on my own. I was sitting there one day compareing the two different rooms and it suddenly came to me why they were both so different in clour. Of course i thought, he cant see pale colours, he obviousely wasn't aware how bright the colours are to other people and it was after that i really started to look at a lot of other things about the house and outside, it made me realise how much i hadn't understood how hard it must be for him to get about. And by the way he is a nightmare when crossing the roads, i almost close my eyes when he does and wait for the crash and he would never except help, although he does more now.
Every time i read something new on this site, i realise that there are other people with the same problems that my husband (and myself and the children)have at home and outside. Thanks for shareing your story Rob, it almost bought a tear to my eye. My husband is on his fourth grapht in his left eye and has KC in his right also, which is now getting worse, so dont give up.
Nessa

[Eamonn Gillespie.]

Hi all. I am glad to have my wee say on the KC issue. I have KC in both eyes.i was diagnosed with KC at the age of 23 yrs i am now 30 Thank god its not so bad it prevents me from wearing GPL - my salavation. With this eye condition i believe in not taking the victim mentality (victims have no power)but that of someone who holds the key to my own happyness. Although this choice can be extremly hard to live by...but one worth pursuing. I was watching the childrens hospital last mon nite....and i realise how extremly fortunate person i am. Everyone has their own cross to carry...it's how one does this makes all the difference.I would love to hear from anyone who has KC.
Eamonn

[Adam]

Hello All

Discovered this site whilst researching an article on KC. I was diagnosed with KC (in both eyes) at 14; started wearing glasses at 15; then, when the condition deteriorated further, moved onto GP contact lenses at 17. As others have stated, the lenses were a revelation - I have not realised how bad my eyesight really was until I was fitted with the lenses for the first time. Suddenly, I could see bricks in building, cracks in pavements, blades of grass etc.

I'm now 28 and still wearing the GP lenses. Over the years, the fitting has changed as the shape of my corneas have evolved. The GP lenses I wear now are slightly smaller and allow in more oxygen. On a daily basis I have few difficulties - I'm lucky to have near-perfect vision with the lenses in. The only problems are that my eyes do dry out, and I miss not being able to read in bed.

I do have a couple of questions for the group. I have read what might be a couple of myths about KC.

1. It predominently affects men rather than women.

2. It is genetic, and more likely to effect people whose mothers were pregnant when over 35.

Has anyone got any views?

(I think no. 2 is definitely a myth - my mother was 24 when I was born, and there is no history of KC in my family, at least as far back as great grandparents).