Quicktopic posts: Apr 2002

[Sue Ingram]

Dear Lisa (649) - I am assuming that you are struggling with rigid gas permeable (rgp) corneal lenses? I wore these continuously for 25 years before my eyes really decided they did not want to do it any more! I now have scleral lenses which cover your whole eye - they are soooooo much more comfortable. Have your ever been offered these? It would definitely be worth a try as you seem to be having some much trouble. They are a bit scary to start with (fishbowls as someone called them!), but after a while you don't think anything of popping them in and out. Everyone has to find the best option for them with regard to lenses but if these have not been suggested to you then see if your optometrist can help you. I am now able to switch between the sclerals and corneals in one day. It seems that the sclerals give my eyes the rest that they need and they can then tolerate the corneals (but still not all day!). If you would like more info or a chat, please email me on sue.ingram@virgin.net. Sometimes it helps just to talk. Take care and I do hope you find a better solution; there will be one for you, it just takes perseverance and that positive attitude, of course! keep smiling! SUE

[Ian - Oxfordshire]

Wagar,

I've been in contact with Ultravision on a number of ocassions and understand that Epicon will be available later this year. They are already available in the USA.

I *believe* they were released several years ago but they've redesigned them using a new material to prevent possible binding to the cornea.

Not sure about fitters in France but I would suggest contacting the UK email address (covers Europe) and seeing if they can help. mailto:lenses@ultravision.co.uk

Keep us posted and best regards!

Ian

[Cone Eyes]

Cleopatra2
Yes it does sound obvious, I wash my eyes (tap water) like every body else does. I think you misread the post, read 2 messages prior to mine RE sore eyes.

[Emma Reilly]

Hi All,

I am also only 15 and have had KC for 2 years now. Presently I have been wearing hard contacts for the past 8 months. They are completely hell. I'm getting my 3rd set in 4 weeks. I've got my GCSEs next month, hopefully they'll be ready for then! My school has arranged for me to get 25% extra time and also larger print tests. I have been refused a coerneal transplant, supposedly I'm too young! Did anyone else find this? In the future I hope to study medicine, but will my KC hold me back? At school I find that some teachers do not beleive that I actually have KC, in fact I was told that I couldn't use my eyes as an excuse for not doing homework. How could I do it if she refused to get me a larger copy. I don't know whether or not I should report it, but surely it can't be fair. Does anyone have any advice for me? Email me if you can at ereill@mtlourdes.fermanagh.sch.uk. Thanks

From Emma

[Mohammed]

Hi Everyone. I've been wearing contact lenses for a couple of weeks now and the hardest thing I've found is when I put them in and take them out. I'm just very worried every time I 've got to take them out that I'll drop them and lose them. Any Advice. Thankfully I've got no problem while I wear them and I can keep them on all day now.

[David HOLMAN]

I have just been added to the list and have set out my history below, perhaps it may genrate some comments or feedback.

I am aged 48 and have been diagnosed with Keratoconus since I was about 28.

At this time I was serving in the Army and although I knew that I had poor eyesight, I was still able to pass my annual shooting tests. Eventually a concerned Army Doctor referred me to an ophthalmologist who said I had Keratoconus. This worried me at first but some careful talking convinced me it was not a major problem.

I was prescribed contact lenses and eventually the MOD coughed up the money for them!!

The condition appears to have worsened until I was about 40 when it appears to have become stable. My astigmatism is not good either. Very few people know that I suffer from the condition and in fact because I wear contact lenses do not even realise I have an eyesight problem.

Without correction I am unable to read the top single letter on the chart and have total difficulty in recognising people

I used to wear soft lenses but eventually these did not provide enough correction and I was in danger of failing a driving eyesight test.

Wearing hard lenses, fitted by Boots, costing about £300, has meant that my vision is now very good and I wear my contact lenses from about 7am to 11pm or sometimes later.

I have good lens tolerance. Occasionally I do get some bright light problems usually when the sun is low and bright in winter. I also get something that I can only describe as eye vibrations, very rapid almost like a pulsing/throbbing sensation. This disappears after less than an hour and I connect it with extended contact lens wear. I find that leaving the contact lens out of the eye that was affected the following day ensures no reoccurrence. This probably happens at most once a year and often less than that. I have recently changed my solution type and have not suffered for over 18 months.

Apart from this my condition has caused me know worries!!

I was watching a program on TV today about diabetes and whilst I do not suffer nor know of any connection I just felt the urge to do an Internet search for Keratoconus. I think I had done one without success many years ago, I have been online since the early 80's. I was very pleasantly surprised to find a UK group and to date know of no-one with the condition and most opticians who examine me seem to want to call in a friend to show them the rare condition.

My most recent one had worked in the West of Ireland and he said that the incidence there was higher than in UK and had seen the condition on a number of occasions.

I am interested in the genetic link, I have no known relatives or ancestors with the condition but am of Celtic extraction here in Cornwall I am actually an avid family historian and can trace my ancestors back a long way, sadly their medical conditions are not known to me!!

Both my parents and my brother and sister are astigmatic but as far as we know do not have keratoconus.

I am surprised that there is no-one else down her in the South West on the list, but with only 40 members, I suppose that statistically this is unlikely.

[Amanda Stigle]

Dear David Welcome to the web-site! Thankyou for sharing your experiences,you are the first soldier that I know of with KC.We have members with varied jobs, many of us like you had our careers before we were diagnosed with KC. But there are also school children. This site belongs to "The Keratoconus Self Help and Support Group" there are approx. 560 members. But only 40 of us that subscribe to the discussion page.Which means we get an e-mail once every day that a new message has been entered on this site.

[Shelley]

Emma, /m656

That's terrible about the teacher saying that! Is it possible for you and your parents to get an appointment with your headteacher and show them all the medical evidence you need - ie. a consultant's letter?

I was diagnosed at 14 (I'm 20 now) and luckily was told I didn't need treatment for some time, but my eyes have now rapidly deteriorated. I am unable to wear contact lenses and am awaiting referral to a surgeon.

I study at university, but I cannot use computers for prolonged periods. The irony is I'm studying a computer-based degree! My university has been most accomodating, on days where I have 2 4-hour lectures on computers they let me take 1 of my choice and I skip the other. This saves a lot of headaches and pain.

If you can't see your headteacher, go to your LEA. They wouldn't be pleased to hear that a student is being treated so badly on account of being partially sighted. Make it clear that you are not just shortsighted, but partially sighted, and as such, need as much support as any student with physical or learning disabilities. I think what your teacher doesn't understand is that you look 'normal'.

I certainly found this, but not because of my sight. I also have ME and had to put up a fight to let my school treat me as a diabled student, able to attend part time and give me extensions on assignments. Unfortunately, even in today's society if you don't 'look' ill then people assume you aren't. It's sickening, but true. Just imagine their faces if you went in with a white stick!

Best wishes,

<a href="mailto:the-boss@little-miss-alien.co.uk">Shelley</a> xxx

[John Smith]

Hi Emma,

Shelley's right, it is terrible; but if you let these teachers "get away" with thinking that you're lying, it will only reinforce their opinion; after all, if you're not lying, you'd complain.

I agree with Shelley that you (or your parents) should see your headteacher. I'd be careful not to anger them, as the school itself appears to be going out of their way to help you with the exams; but I'd certainly mention that they are probably in breach of the Disability Discrimination Act. They won't want to be sued, so that should focus their attention!

As for the University career, my advice would be not to worry about it. Make sure that your interviewers are aware (put it on the UCAS form if there's an appropriate box). Yes, you could face problems reading slides, but you're likely to get printouts of them if you ask; and by then you may well be eligible for the corneal transplant that will help so much.

Good luck with the exams, and let us all know how you get on.

John

[Amanda Stigle]

Hi Emma. I agree with what Shelley and John have said. But also wondered if the RNIB or local equivalent could give advice or get a representative to attend a meeting with your Head Teacher, you and your parents? Worth a phone call. What part of the country do you live in? GOOD LUCK