Quicktopic posts: Jun 2003

[Freddy]

Dear all,
I am another one to say thanks for the Conference. I have never met that many people with KC before! In fact I had only ever met one before! A strangely isolating condition I suppose.

Francesca,
If you want to ask about experiences of graft operation do email me freddy.bull@btinternet.com Each persons experience is very different so it may or may not be for you. What I would say is do follow all avenues as well as teh graft option. It is a big decision, though not one I regret.

Best wishes, Freddy

[Lois for Stacy]

To KateF,

Hi Kate, just wondering how things are going for Dale? Have you been successful in inserting the scleral lens in his eyes? How is his vision? Does he have many problems wearing them?

We are still struggling with knowing what to do for Stacy. She is scheduled for a transplant on July 28th, but I am still trying to get a Dr.Rosenthal in Boston to review her records and see if he felt she would qualify for a scleral lens instead of the transplant. He is the only Dr. in the USA that works with these lenses. At this point the only thing our Dr. in Wisconsin can do for Stacy is the transplant.

Not sure if I have your correct email address. I've sent a couple msgs but not sure if they went through to you.

Hope all is going well for Dale and that his vision has improved. I know you are walking down a very challenging road for him.

Take care,
Lois

[aimee.wilkes@bt.com]

Hi,

this may seem a very strange thing to say but sometimes my eyes feel very strange, they feel as if they are not my eyes, and I feel quite dizzy and off centre when this happens. I have got used to this but I was just wondering if anyone else has the same problem ?

Aimee

< replied-to message removed by QT >

[OstrichBoy]

Can anyone recommend a good optician in the Oxford area? My condition is getting worse and I wasn't impressed with Boots last time I went.

Thanks,
Steve

[KateF]

To Lois and Stacy
Hi Dale gets his lenses July 30th - or I think he will, we have an appointment then and I hope that will lead to lenses quite quickly. He wont have to have a mould made as Ken already selected whichtype he has to have and moulding requires co-operation!
Meanwhile have been watching this site carefully to see what successes and failures scleral wearers have -impressed with peoples patience and enthusiasm that pays off so determined to stick with it - we'll see if Dale (who has severe learning difficulties ) agrees!!
Met scleral wearers, post surgey folk and all combinations at the KC day in London - tha main message I came away with is don't expect one answer, keep trying options and changing and going along with whatever works best at the time. (and never travel on British trains if you want to get somewhere!)
Kate xx

[Lois for Stacy]

To KateF,

Good luck with the lens, I will be anxious to hear how Dale accepts them and how you are doing inserting/removing them. I heard that Ken is very patient with people and he was successful inserting the lens in Dale's eye. Stacy has been a little more accepting of letting me put salve in her eye, but her eye openings are very tiny. Just like all other internal organs for Downs people. Is the scleral lens made to fit based on each person or is there a range of sizes and they choose the closest fit?

Thinking of you and hope all goes well.
Lois :>)

[Jessica]

Hi everyone,

Thanks to everyone who gave advice on Sclerals.

I put them in this evening, and managed to wear them for around two hours, before I got a big air bubble in the left one. Vision was a little blurry all evening, so I think that the air bubble must have arrived when I first put them in, and developed from there.

I can't believe how comfortable they are to wear though. I think I find them as comfortable as corneal lenses... and far more comfy than specs. And sclerals don't make me feel 'sea sick' like my glasses do sometimes...

Totally agree with you, Lois, that Ken is very patient. He's really enthusiastic about the lenses as well, and his enthusiasm definitely rubbed off on me!

Jessica

[Janet Manning]

To Steve,
If your cndition is getting worse, I suggest you get your GP to refer you to the Oxford Eye Hopsital. Ken of Moorfields fame, comes there about every 6 weeks, so you would get specialist help.
Janet

[Janet Manning]

Hello to all you people getting bubbles in your sclerals!

I find it helps if, prior to insertion, I fill the lens with saline to overflowing. I then concentrate on keeping my head down, with chin tucked in, so that my eye is virtually horizontal as I insert the lens. This prevents the loss of as little saline as possible, and thus prevents air bubbles getting in.

Don't know what to do about bubbles that develop during wear, as I haven't experienced this. Could this be due to an ill-fitting lens?
Janet

[Mark]

hi! I was at the KC conference & found it v good to share others experiences of KC. I'm 25 & have had KC since 1993. I can relate to not wanting to let others in on the sight problem as prior to getting my first corneal lens I wasnt able to see well enough to copy from the blackboards at school- great for reducing the homework! However with the benefit of hindsight Id give anything to have kept the teachers etc informed.

However I passed my exams, went through 6th form and university with my corneal lens and up to 2001 all was well. Problems in 2001 left me with corneal scarring and unable to look for work as i was unemployed. I have since the start of this year 2003 been wearing a scleral lens and am getting my life back on track. I also have asthma, eczema & hayfever, & get air bubbles in my scleral.
It's reassuring to know I'm not the only one!
Good luck everyone!