KC – ia debilitating illness and a progressive disease?

[Steven Williams]

I was recently asked by a very good friend to be truthful and sum up the effect of KC on my life in one word and informed him DEBILITATING .

I expanded on this and stated that it was not only a progressive eye disease but without adequate medical support or help or workable solutions had become a debilitating illness which is not recognised as a disability in society.

Definition of debilitating:-

tending to weaken or enfeeble
impairing the strength and vitality
weakening
tiring
exhausting
draining
fatiguing
wearing
sapping
incapacitating
enervating
enfeebling
devitalising

As a KCer whats your take and would you agree/disagree with the above?

[Anne Klepacz]

Much of that applied to me when my vision was at its worst before my corneal transplants. Limited wear time of my contact lenses meant that I really struggled through the working day and had no life outside work as without lenses in I was effectively blind. For me, transplants gave me my life back. But for most people with KC (it's around 10-20% who eventually need a graft) progression can be very slow and the condition does tend to stabilise. And there is more help than there used to be, with schemes like Access to Work.
But that's probably little comfort to anyone who is in the 'debilitated' phase. We did have a session on the emotional impact of KC at our 2011 conference. That DVD isn't available yet, but I do have a transcript of the session which I can e-mail to anyone who is interested.
Anne

[Steven Williams]

Hi Anne,

Delighted to read that transplants worked for you.

Thanks for that. I would have to disagree with you imho you become debilitated as soon as soon as the rapid deterioration in eyesight is noticed and you are diagnosed as having KC.

Would it be possible to put the transcript you refer to on this website for KCers as a useful source of reference?

Please forward me a copy of the DVD when it becomes available. Many thanks Anne.

[Anne Klepacz]

Our webmaster, who is creating the DVD, was planning to put some of the sessions on YouTube. I'll be seeing him at the London meeting next week, so will check where he's at with that and whether people can already see any of the conference sessions there. He's also the only one who can upload documents on to the main website. I'm afraid my IT skills don't extend to being able to put my document on the forum. Apologies.
Anne

[Steven Williams]

Our webmaster who is creating the DVD, was planning to put some of the sessions on YouTube. I'll be seeing him at the London meeting next week, so will check where he's at with that and whether people can already see any of the conference sessions there.

Sounds good and a huge leap forward - sessions on u tube with the u tube links here on the website. - thanks Anne.

[Loopy-Lou]

That's a really excellent idea putting presentations on Youtube and I believe emotional wellbeing is something that could usefully be revisited at further events using KC'ers experiences, may I also suggest a fixed thread for emotional input as when sight is deteriorating the distress is obvious but there are the longer terms issues as well and people vary so much in their ability to cope.
Access to Work, I'm still waiting to hear of a good experience of this!

[munster]

I totally agree with everything the OP has said, and all apply to me.

I often bore my family with my frequent rumblings of visual acuity

Last nite whilst driving home after my 11hr shift of driving an armoured security van. I seen about 20+ images of the moon, in my usual circle formation. First time I have seen each so clear. Thats with my Kerasoft 2 lenses, which give reasonable daytime acuity. My nite vision generally varies depending on, how my eyes are at the time, and lens quality at that time too.

I stumped my lens fitter, and left him with no answer, I told him my favourite quote:

"If KC isn't classed as a disablilty because I can wear lenses. Then, people who use wheelchairs can't be considered disabled either!
Without my lenses, I will be partially sighted and unable to read or see detail. Lenses are my temporary aid, just like a wheelchair is!"

[Steven Williams]

may I also suggest a fixed thread for emotional input as when sight is deteriorating the distress is obvious but there are the longer terms issues as well and people vary so much in their ability to cope.

Spot on Lou and an excellent suggestion - fixed thread.

Not sure what

OP

means Munster perhaps you could clarify.

[munster]

Not sure what OP means Munster perhaps you could clarify.

OP just means "original post", or "original poster". Its forum shorthand to mean that your referring to the first post or the thread starter

[Loopy-Lou]

"If KC isn't classed as a disablilty because I can wear lenses. Then, people who use wheelchairs can't be considered disabled either!
Without my lenses, I will be partially sighted and unable to read or see detail. Lenses are my temporary aid, just like a wheelchair is!"

- this is why we need changes to visual registration to include Variable Sight Impairment - if I can't get my lens in I don't go very far but current registration wouldn't recognise this - and neither do all eye practitioners. If we are partially sighted without correction that should be recognised. If we cannot always use correction that should be recognised.

I could probably get a provisional driving license if I really wanted to purely on the basis of my one 'good seeing eye' with an RGP for distance and glasses in addition for reading. However as anyone knows with RGP's the slightest bit of grit under this lens causes intense screwed up eye pain and streaming, in other words you're temporarily blinded until you can get it out, clean it, wait for the eye to settle then reinsert. So how would that work on a motorway at 70 miles an hour? Yet on the basis of corrected vision in that one eye I could probably get one. As someone with mental health problems just imagine if my condition meant I threw caution to the wind?