Mums

General forum for the UK Keratoconus and self-help group members.

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drink
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Keratoconus: Yes, I have KC
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Mums

Postby drink » Mon 15 Jun 2009 1:51 am

My mum seems to think i have 'bad eyesight' because of to much television ...... :lol: (bless her really).

The annoying thing is she cant get it in her head i have KC, I have tried telling/explaining to her i have KC plenty of times but it doesnt seem to go in her head... she just thinks i have 'bad eyesight' and tells people its because im sat in front of tv all the time (man thats soo embarrasing!!!, i dont even watch that much telly)!!

According to her im always in front of telly thats why i have 'bad eyesiight'...who goes work all day? out to gym every other day after work??? im also into cars so most of the time id be working on my car!!!! so how rhe hell can i be in front of the telly ALL the time like how she says???
she cant get it into her skull i have KC! its soo anoying!

Rant over ...

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Andrew MacLean
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Keratoconus: Yes, I have KC
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Re: Mums

Postby Andrew MacLean » Mon 15 Jun 2009 6:19 am

Ttuf

Welcome to the forum

People with keratoconus live with all sorts of misunderstandings, and your mother's attempt at making sense of your eye condition is just part of it!

Why not print off the leaflets on the site? I know that we do not have one for mothers, but your mum might find the information interesting, none the less. You can find them at

http://www.keratoconus-group.org.uk/sitev3/kcinfo.html
http://www.keratoconus-group.org.uk/sit ... tions.html

Also: if you want her to have a chance to see what the world can look like for people with keratoconus, there are some pretty fair simulations at

http://kcvision.org/

Give them to your mother, tell her that if she has questions she can register with the forum and ask us. She may be a bit shocked by what she reads, so you may have to offer her some support; denial is one way of coping with the news that you have KC, and when that is taken away may it become necessary for other coping strategies to be developed.

All the best, and welcome to the forum.

Andrew
Andrew MacLean

drink
Regular contributor
Regular contributor
Posts: 80
Joined: Mon 15 Jun 2009 1:16 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Mums

Postby drink » Mon 15 Jun 2009 12:39 pm

Hi
Thank you for a kind welcome Andrew. You have given some brilliant advice and the links above are very useful, i will deffinately be printing them off and giving them to have a read through.

Also the link which shows KC vision is mazing, its actually how exactly my vision is, my sister always asks what my vision is like, she will be seeing the link too :D .

I have always come onto the net looking for 'cures' or 'treatments' for KC, im sure there must be something out there to restore our vision to its former glory, i wouldnt like to go through grafting/transplants as that sounds kinda painful etc, i might have a try with C3-R, i thought my KC was bad, but it seems some of people on here have it worse than me. Il be doing my reaserch on C3R, i would like to have it done so i can be sure my eyesight will not be getting anymore worse, from my understanding C3-R is good for stopping KC from getting worse, however i may be wrong....
I need to book an appointment with my eye doctor abd duscuss it with him, il probably take a trip down to germany as it seems that is where is started off at, and more affordable there aswell...

Il be lurking around the forum nbow looking into C3-R and few other things.

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GarethB
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Keratoconus: Yes, I have KC
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Re: Mums

Postby GarethB » Mon 15 Jun 2009 2:36 pm

As C3R is available in the UK privatly I don't think in Germany they are accepting UK patients anymore.

Please let us know if that is the case.
Gareth

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space_cadet
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Re: Mums

Postby space_cadet » Mon 15 Jun 2009 4:50 pm

I moved house about 4 months ago now, have watched roughly 5 things on tv if that in this time.

Pointless when haven't to ask my partner why preople have aditional limbs and heads.
x
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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MartinC
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Keratoconus: Yes, I have KC
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Re: Mums

Postby MartinC » Wed 17 Jun 2009 4:41 pm

After chatting with my mother-in-law about a potential graft etc for ten minutes or so, you can imagine my frustration when she ended the conversation with "well, couldn't you just wear your glasses?"

AAArrgh!!

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GarethB
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Keratoconus: Yes, I have KC
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Re: Mums

Postby GarethB » Wed 17 Jun 2009 7:11 pm

Been there! I got my mother inlaw to look through the frosted glass on her front door while it was a jar and told here to hold a powerful magnifying glass on the other side.

She soon got the message :D
Gareth


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