Quicktopic posts: Apr 2003

[Louise Pembroke]

Hi folks, I've not had Lasik treatment, but I've had laser treatment to seal off blood vessels growing into the graft. One of docs said that incisions can be made in the graft to alter the shape of the cornea to make it more even [don't know if that's with a blade or laser] but the outcome would be unpredictable, don't know if that's useful at all.
Sqeezy saline - whilst I was in clinic this week I got chatting to another patient briefly about the cost of solutions so just in case he reads this, the cheapest I know of is from Superdrug [their own brand]at £1.50 for a large bottle. Also just recently I noticed Boots have started doing their own brand of sqeezy in a travel size [120ml]at £1.99. I know that's not economical but it's good for your handbag on a night out rather than lugging around a 360ml lump.
Some opticians will give out [if I smile sweetly] or sell for a £1-2 a Baucsh & Lombe trial size pack of cleaning/soaking solutions though they are not supposed to apparently, but again these are good handbag size for a night out. Perhaps it might be worth us writing to manufacturers about travel size bottles?
Would anyone be interested in participating [that is if it were desired by eye hospitals/lens depts]in staff training? If depts were to ever consider user involvement in training of lens technicians/junior dr's, I reckon many of us would have a lot to offer, I just wanted to see if anyone else would potentially have an interest?

[Tony Stigle]

Hi.all
For your info. We are without a computer at home for a while.. so you will not be able to contact Amanda ( Mandy) on her normal (AOL) E.mail address.. Any E post to me sent to me Please.. Thanks
Tony Stigle..

[Payne Family]

My daughter has KC (diagnosed 8 years ago) and started off with glasses but got to a stage where she couldn't see clearly. She tried every type of soft and hard lens available and either couldn't see or couldn't tolerate the discomfort and we were at our wits end. (she tried dozens of different lenses).

As a last resort we had her eyes checked again and to everyone's suprise her prescription had quickly changed again - we got her vision with glasses back to as good as it has ever been with glasses. My daughter was diagnosed with KC at the age of 4 and is now aged 12.
Hope this may help.
< replied-to message removed by QT >

[Paul Hopkins]

Found out I had KC 13years ago when I was 22yrs old, when the company I worked for made me go to the opticians. From there my GP referred me to see a specialist & there referred me to Herts & Essex Hospital, Had variuos contact lenses until some yrs later I couldn't wear them in my right eye because off extreme discomfort. Then I was referred to Moorfields Eye Hospital & had other corneal lenses to choose from for a while for my right eye, then my left. Again had more trouble with my right eye with corneal lenses & again referred to someone else (Ken Pullen). He introduced me to Scleral lenses. My first reaction was, your not going to put that in my eye are you, because of the size it freaked me out. Anyway I let him put it in (this was for my right eye) & to my suprise I couldn't believe how comfortable it was. Once I got my first actual scleral lens (after a few months of persevering to get it in myself) I can't believe how much it has changed my life. I can do things now that I couldn't do before. Now I have one for my Left eye. But I can also mix & match my Corneal & Scleral lenses together. Originally I was referred to Moorfields to have a corneal graft, thanks to Ken Pullen I don't have to.

[aimee.wilkes@bt.com]

Deleted by topic administrator 19-04-2003 01:18 AM

[helen royston]

Hello, I haven't been for a while so thought I'd just drop a couple of lines, I've had to take my lenses out as my eyes were itching like mad, so please excuse any spelling mistakes! Just wondering if any-one is from South Yorkshire, Rotherham to be precise, give us a shout if you are either on here ir via e-mail on
raymond@roystonr.freeserve.co.uk be nice to chat with any one who knows where your coming from when you mention KC.

[umbilica@umbilical.demon.]

Louise said:

Would anyone be interested in participating [that is if it were desired by eye hospitals/lens depts]in staff training? If depts were to ever consider user involvement in training of lens
technicians/junior dr's, I reckon many of us would have a lot to offer, I just wanted to see if anyone else would potentially
have an interest?

Sounds like a good idea, and possibly I might. So long as it
doesn't get tot he point where we're being used as unpaid
assistant lecturers, doing what should be being done anyway, cos we're cheap!

Rosemary
--
Rosemary F. Johnson

[listener@umbilical.demon.]

About training for hospital staff:

Thinking about this again, it strikes me it would be a very good thing - if it doesn't happen already; does anyone know? - for
such staff to be trained in thinking along the lines of the
Social Model of disabilities. Sadly all too many of them are
inclined to think all the time in medical model terms.

FOr those of our readers not familar with this, the "medical
model" would say I have great difficulties getting a train from
Liverpool Street to Southend because I'm a poor girl with
somehting wrong with my eyes, and go to great lengths to work
uot what's wrong with those eyes and what sort of medical device or surgery might improve them. The Social Model says I have
great difficulties catching said train from Liverpool Street
because some idiot designer in the station rebuilding put the
departure board way, way up high in the roof against a glass
ceiling which is dazzling in daylight. And would attempt to
address this by badgering Railtrack to put lower level, high
visibility departure signs up ..... not next to the passport
photo booth with all the debilitating flashes......

Would I be interested in doing some of this? Possible, to some
extent. But not as an unlimited supply of free labour!

Rosemary

--
Rosemary F. Johnson

[Louise Pembroke]

Thanks Rosemary, I take your point about the social model, this is something I talk about in mental health training. It would be good for staff to understand something about the difficulties we encounter outside of the clinic, I've lots of thoughts about purely clinic stuff too. Perhaps people interested could contact their hospital directly to talk with dept heads directly?

[helen royston]

Hello!
To Ali Cooper, you sent me an e-mail but you addressed it to Raymond, he's my other half, how are you, I was diagnosed with KC about 6 years ago, hope to hear from you again soon. Helen.