Question

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kieran19685
Regular contributor
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Posts: 146
Joined: Mon 03 Sep 2012 11:50 am
Vision: Contact lenses

Question

Postby kieran19685 » Thu 24 Mar 2022 12:13 pm

Hi all

How do people deal with the mental challenge of having KC? i seem to constantly think about it and barely a moment passes where its not on my mind.

I generally get on fine with contacts but its difficult to not think about it all the time

thanks

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space_cadet
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Posts: 955
Joined: Tue 12 May 2009 11:46 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Leeds
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Re: Question

Postby space_cadet » Thu 31 Mar 2022 5:24 pm

nope if honest I just go about my day, my lack of eyesight and visual disturbances are a small part of my day to day life.,

there is sight related counselling available for free via teh RNIB maybe give them a call on their helpline and ask to refer yourself? I had some sessions iwth them when my KC left me registered as legally blind / severely sight impaired over a decade ago and it was incredibly benefitical to me 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

Green
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Posts: 279
Joined: Wed 18 Apr 2018 1:29 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Question

Postby Green » Tue 12 Apr 2022 6:00 pm

Hi Kieran, I struggle with it, with lenses, the prospect of graft failure, more surgery, I greatly fear being permanently SVI in both eyes on a permanent basis, I experience panic, anxiety, depression. I also find it difficult that we don't have official recognition of variable impairment ie without lenses, before/after surgery, it would help if services gave us a card, something. Only today Claire Sisko on the news as a registered blind person speaking about being called a faker because of makeup, using a phone, so what chance does variable impairment have, even less.

What I've found helpful is not deny how I feel - however we feel is justified - we're not obligated to be stoic, be positive. I feel forcing that makes me feel worse.
So I have bad times, but I've also learnt to shelve it as well, because I can't be immersed in it 24/7.


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