Down's sydrome and Keratoconus

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Charlottes mum
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Re: Down's syndrome and Keratoconus

Postby Charlottes mum » Tue 22 Dec 2009 7:50 am

Hi! Without meaning to turn this into a "blog" re Charlotte I just wanted to post a quickie: Eye clinic yesterday. Char collected her CLs (increased script in the right as prev mentioned) and the left eye lens. Her reaction? (quote from Char) "I'm excited! Everything's even more big! It feels weird. I like it." :D :D Nuff said!! :D :D :D Our journey continues, albeit on the right road. Happy Christmas everybody! Thanks for being there xx
"Promise me you'll always remember that you're braver than you believe, you are stronger than you seem and smarter than you think" .....Winnie the Pooh

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Re: Down's sydrome and Keratoconus

Postby Andrew MacLean » Tue 22 Dec 2009 7:52 am

Three cheers for Charlotte.

Andrew
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Re: Down's sydrome and Keratoconus

Postby space_cadet » Tue 22 Dec 2009 11:25 am

Andrew MacLean wrote:Three cheers for Charlotte.

Andrew


Exactly what I was going to say :)

*woot woot for Charlotte*
oxo
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

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Charlottes mum
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Keratoconus: No, I don't suffer from KC
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Re: Down's syndrome and Keratoconus

Postby Charlottes mum » Thu 31 Dec 2009 9:37 am

Charlotte is coping well with increased wearing of lens in her right eye. But the CL just won't stay in her left eye :? We know it is her more keratoconic eye and Agnes told us that getting a good fit in that eye might take a bit of tweaking re lenses/fit etc................we had hoped that it would fit just as good as the right though so we are a bit disappointed for Charlotte. She has really good vision through it though and she's ok with it as long as she doesn't move so much (not practical with an all singing all dancing 17 yr old!!) Back to the eye clinic on Fri 8th anyway so we will see what's to do.
"Promise me you'll always remember that you're braver than you believe, you are stronger than you seem and smarter than you think" .....Winnie the Pooh

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Re: Down's sydrome and Keratoconus

Postby GarethB » Thu 31 Dec 2009 9:47 am

It might be disappointing now, but with the range of lenses available I am sure Charlottes patience will pay off. You never know one of the specialist soft lenses might help. For my right eye, the RGP lens sat to one side of my eye as it was the only way to get good vision and lens comfort beacuse of where the KC cone was. Tis meant rapid eye movement when I was driving or playing computer games with my daughter the lens could move and be blinked out.

Now I wear the Kerasoft IC lens which is larger than an RGP lens (still about the same size as a regualr soft lens) and because of this the skirt of the lens is in a position on my eye to keep the lens stable. My hospital thought these would not work, but since I can now wear a lens completly pain free all my working hours, do a variety of sports and get 6/5 vision they accept there are situations where they can work as well as an RGP lens. Might be one extra option to consider.
Gareth

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Charlottes mum
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Keratoconus: No, I don't suffer from KC
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Re: Down's syndrome and Keratoconus

Postby Charlottes mum » Thu 31 Dec 2009 9:57 am

Thanks for that quick reply. I'll certainly mention all that on behalf of Charlotte next week at the clinic. All comments and suggestions are very, very much appreciated so cheers again! :D Angie 4Char :D
"Promise me you'll always remember that you're braver than you believe, you are stronger than you seem and smarter than you think" .....Winnie the Pooh

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Charlottes mum
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Keratoconus: No, I don't suffer from KC
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Re: Down's syndrome and Keratoconus

Postby Charlottes mum » Mon 04 Jan 2010 4:04 pm

lenses.jpg
31st Dec 2009. Charlotte L&R cl in
(144.33 KiB) Not downloaded yet


Hi. I wanted to share this with people on here. Hope that's ok. I took this photo with my mobile phone camera a few days ago, I was amazed at how clear it is with it being quite close up. Charlotte seems to be tolerating the left CL a little better over the past few days. She had a cold over Christmas, maybe that didn't help with its "staying power"? Its still a bit floaty though. Angie
"Promise me you'll always remember that you're braver than you believe, you are stronger than you seem and smarter than you think" .....Winnie the Pooh

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Re: Down's sydrome and Keratoconus

Postby Loopy-Lou » Thu 07 Jan 2010 1:39 am

Fantastic picture, looks great! :D

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Charlottes mum
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Keratoconus: No, I don't suffer from KC
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Re: Down's syndrome and Keratoconus

Postby Charlottes mum » Thu 14 Jan 2010 9:01 am

Eye clinic yesterday. New left CL ordered. Slightly bigger diam. and steeper hopefully to accommodate "cone". Char very good, tolerant etc :) Mini scleral possibly an option to go at if no joy with this CL.
"Promise me you'll always remember that you're braver than you believe, you are stronger than you seem and smarter than you think" .....Winnie the Pooh

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Andrew MacLean
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Re: Down's sydrome and Keratoconus

Postby Andrew MacLean » Thu 14 Jan 2010 10:41 am

The point is that you never give up! If one lens does not suit, there is another to try, and then another ...

I am afraid that, with all of us, determining the right lens is a matter of trial and error.

Every good wish.

Andrew
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