UK Keratoconus Self-Help and Support Association

'Part time partial sight' is a term many of us have used to describe our difficulties because with KC without lenses [and/or relying on monocular vision] some of us can literally be at the opposite end of the eye chart. Other people can find this hard to grasp and may even not believe us because public perception of eyesight is that you're either 20/20 or blind or just need to put some glasses on!
It makes me think that we could do with an inbetween term such as 'variable sight impairment' or 'variable eyesight condition' to convey that sight is not always 'fixed' at a certain point, that a person may read one minute and not the next [after needing to remove a lens]. It can get so difficult to explain this to people which is why I think we need terms to sit in between seeing, not seeing and partical sight [even partial implies it is fixed at that point]

What are your thoughts?

I'm certainly at opposite ends of the eye-chart. With lenses I see well, but without them I can't see the chart let alone read the first line.

I agree with you, Loopy-Lou, that many people are not aware that there are some eye problems that can be helped with contact lenses and not with glasses. Several times I have explained to people how contact lenses for KC are like balancing saucer on a rugby ball.

Very, very occasionally, when I've had problems, I've removed my lenses at work and resorted to back-up glasses. With these I can read the computer screen but it's tiring because although the glasses help my myopia the multiple images and shadow affects remain. But some of my colleagues see me wearing glasses and assume that I can see with them, well yes, I can see something, but not everything! Others see the thickness of my glasses and have called them 'scary' and begin to appreciate that I do have problems which for the majority of the time are solved with contact lenses.

Lia

saucer on rugby ball that's inspired what a good description!

This is why I think language needs to be developed and updated sometimes for us and others which is why I think it would be useful for some sort of 'variable' sight condition term to be introduced by eye groups such as us, the RNIB and medics. Once a term is in common usage it becomes common knowledge

Hi. I've noticed that if Charlotte is watching tv without lenses in (and no specs on ) she doesn't appear to have difficulty in seeing the screen (its a big screen tho - 42") her near vision isn't so bad. Its the distance which presents a prob.

Hi Lou!!

A very good point and one I am working on with various Optical Groups actually. There is some discussion that there needs to be a separate registration category and terms such as "Visual Disability" or "Visual Impairment" were mooted though I must admit I would like to have the term variable in there! My concern was that "patients" should have some input into the name of such a registration so this is a good place to get some feedback.

These sort of things take ages to get going and convince people of their necessity, but unless people push, nothing gets done!

I would be interested in replies to this very useful post!

Lynn

Hi Lynn, well I would like to suggest 'variable visual impairment' and I would be interested in taking this further because as you rightly say unless optical groups push for this it won't happen. I would suggest that the KC group would be very well placed to offer a brief position statement on this if members and committee were wanting to do so. It would need the push from the KC group, RNIB and optoms.
Otherwise I'd be happy as an individual to support work in this area Lynn so please feel free to contact me

"Variable Visual Impairment" works for me, too.

Part-time partially sighted is certainly a phrase we've used in some of our literature. And, of course, if you think about other long-term medical conditions, there are loads where people are fine some of the time and then have a flare up like rheumatoid arthritis or MS or various skin conditions. People don't seem to find it so hard to understand the variable aspect of other health problems, so why is it so difficult to realise the same can apply to sight?
Anne

The problem with PTPS is that it conceals the fact that, for many people the experience is Part Time Blindness.

Andrew,

I know most people think of blind being not being able to see anything whereas many people who are registered blind can see something. But what are the definitions of blind and partially sighted?

Without my lenses everything beyond two or three inches is blurred, but with glasses I get loads of multiple images and my sight was defined as 6/9 in my better eye. I can read with glasses but the overall sight correction with glasses is not very good but do you how would my sight be classified?

Lia