Quicktopic posts: Apr 2003

[helen royston]

Hi Dave,
Your're welcome, I work with computers to, but I can't really see them getting me another screen good for you any way! Talk to ya later.
Helen

[KateF]

To Lois and Stacey
Hello from me and my son Dale. Dale is seventeen, has Down's syndrome and with a difficult start in life didn't have glasses or any useful 'looking' behaviours until he was seven when we adopted him. He looked like a blond angel but wasn't!! It's officially descibed as 'challenging' now, dale is very much one of the family, but very difficult, some say autistic.
Dale started off at 7yrs with specs for short sight and astigmatism, the lenses getting stronger every time he was assessed, and enormous squint problems. He has always behaved as if he can see ( but doesnt want to bother!). His eyes changed the most with puberty - alongside moodiness and thyroid changes which made him heavy and grumpy... in 1999 age 14 he had a hydrops in his left eye at which point we were told he had keratoconus. Further deterioration in vision, particularly losing the edges of vision eg tripping on kerbs or catching on doorframes, plus a hairline scar on left cornea. I was firmly told that he would not be a candidate for lenses or graft as he cannot be expected to keep his fingers away from eyes - he does rub his eyes - so far I've read only one suggestion that this might provoke KC in someone with a KC tendency but that cant be proved as it might be the KC and lack of focus that starts the eye-rubbing!!
Another research idea is that KC links to over-sensitive skin ie excema etc and the link to eyerubbing would then be obvious.
Dale has been managing on thick-lens glasses, we have to have the edges ground down to limit the weight so they have a bottle-bottom circular look to them - they help but do not correct vision as his eye is too conical for proper refraction required to focus on the retina.
In Jan 2003 Dale had hydrops in his other eye - took all of Feb and March to resolve but once he was used to the eyedrops didnt cause him any apparent difficulty. I began to think again about why, if he would tolerate drops, he couldnt tolerate lenses, and asked Ken Pullum (via this site) for advice. This month Dale has seen Ken and we have decided to try Dale with scleral contact lenses ie lenses which are big enough to cover all the front of the eye - no edges to be seen or rubbed out! Ken was terrific at gaining Dale's confidence and supportive, and is guiding me through the process of prescription and follow up -
many hurdles to go, but I am very motivated by thinking dale can be a sighted adult rather than a blind one, and I think that once Dale gets his lenses in he'll be quite interested too. keep in touch, Kate

[John Smith]

HI Helen,

> but I can't really see them getting me another screen

Really? Why not? Under reasonably new UK legislation, your employers are obliged to provide you with any special facilities that you NEED in order to do your job.

I work with computers all day, and I was having great difficulty in seeing the 14" nionitors provided. I'm now working with a lovely 21" machine, and I'm the envy of everyone else on the floor!

You should talk to your employer, and mention the magic words "Disability Discrimination Act" if you feel that it would help.

Regards,

John

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[Laurence Power]

Hi to everyone

I have just been told I have KC,I am 38 yrs old.I have an oppointment with my doctor on the 29/04/03 to try and get a refferral to the local hospital.And I have lots of questions to ask about my job and hobbies.I live in the chichester area and would be glad to meet or speak to anyone in the area.The first optition I went to cannot help me,the second where very good but said the local nhs does help with KC costs. Then they told me it would cost £100 per lens and £150 for fittings. Hopefully I will get some answers from my Doctor.

[Andrew MacLean]

Hello Laurence

I was 33 when I was first diagnosed (20years ago). I'm pretty sure that the contact lenses I get through the hospital in Glasgow cost me a great deal less than the price you've been quoted (I think I only have to pay &#A3;44 per lens). Anyhow, I have found this site a wonderful resource, and wish it had been here when I was feeling my way at first.

All the best with your appointment.



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>From: QT - Laurence Power <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: QT topic subscribers <qtopic+subs@quicktopic.com>
>Subject: Keratoconus
>Date: Mon, Apr 28, 2003, 4:49 pm
>

< replied-to message removed by QT >

[Andrew MacLean]

>Hello Laurence

I don't know what happened to my pound symbol but the price I think I pay is forty four pounds! Sorry all!

Andrew

[KateF]

Hey Laurence
try contacting Anne - anneklepacz@aol.com and ask for details of membership of keratoconus-group and if there are still spaces for the June UK conference, June 14th.

Ask her to recommend which hospitals are fully up square with KC technology, or a doctor/optician in the kc-group
(I'm not sure if it's OK to name my sons good doctor here, or post my phone no/e-mail - advice from internet boffs please!)

When you read all the messages remember that there are many different levels of severity and although it helps to read others experiences it can get unecessarily scary if you're reading about severe cases and you are not destined to be one. I think the mild/less affected are less likely to be chatting and stuck for help.

Dont let the hospitals lead you up the wrong path - when you've waited months for a consult you want to go with what they say, but I now know that the 'knowledge' (ie no help for KC with children with severe learning disability)I was given at Bristol eye hospital was 20years out of date - worth spending time researching recommended hospitals and figuring how to get tranferred...

Go to it! KateF

[KateF]

to Helen R
DEMAND a better screen!!
Disability Discrimination Act 1999 says Accessibility for All and is particularly hot on aids for vis.impairment which are relatively easy to provide compared to hearing loop systems, lifts etc!
The rules for our school are that we (governors) have to have the Accessibility Plan in place and submitted by this April and all enacted by next April so the pressure is on.
You could rightfully ask for a better screen which isnt much cost compared to braille machine, taperecorded minutes etc etc (be creative and think of costly comparisons!) and also you can get a no-wobble screen - new screens are more stable but some older screens balanced on a Pc on a cheap desk can get quite a lot of micromovement going and make focussing anything 100x harder or tiring. (especially if you type looking at screen and not fingers!) We have even had BigKeys at school which have bigger keys with nice big letters on, the staff love them! and phones with big keys too.

If you dont want the hassle of negative arguments you could bring in positive press - a nice photo showing how forward your company is in the Accessibility stakes...
kateF xx

[John Smith]

Well Done KateF!

Thanks for your posting.

I think that we (KCers) are generallly a proud bunch, and we don't want to think of ourselves as disabled. We don't look disabled, and we tend to muddle on...

Unfortunately, being unable to see IS a disability, and I've certainly found things much easier at work once I've admitted this to myself.

I no longer have problems reading a small screen - colleagues tend to print in large fonts for me, or photocopy enlarging A4 to A3. I can get time off for hospital/opticians appointments without any fuss.

It's certainly worth it, and I recommend everyone to consider how the DDA and the support of their colleagues will make their lives easier.
John

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