New Sight Registration possibility for KC: Input needed

[Lia Williams]

If only being fitted with contact lenses was that simple.

I’ve had lenses that gave 6/6 vision in a test situation but because of the multiple images gave far less in practice and I’ve had lenses that were apparently a good fit but became intolerable after a few hours. But there have also been the lenses that were comfortable and gave good vision but were unhealthy and I was told not to wear again (those old PMMA lenses). Not to mention that I know when I’ve got my lenses in the wrong eyes because the right eye sees better with the left lens!

I’m fortunate in as much as my KC is fairly stable and not that bad (just difficult to fit) but for anyone whose eyes are continually changing it must make contact lens fitting even more trying.

Actually it can be quite difficult to explain to an optometrist that the lens she (or her colleague) spent ages fitting at the last appointment isn’t working as well as you’d hoped it would. Sometimes the joy of receiving the new lens is quashed when it doesn’t live up to expectations. And then some kind meaning friend suggests that you see their optician who has prescribed them some wonderful daily contact lenses for their -1.75D eyes!

Lia

[rosemary johnson]

Agree entirely about coping with suddenly restored (or improved) sight not being simple.
It was one of th questions I asked when they were suggesting a graft: What assistance is there to adjust to suddenly better sight, becaue I don't know what I'd do with it if I suddenl had it.
I thought the question ought to be asked, but the medics didn't seem toahve a clue about what I was talking about. Iwas most disappointed. Alas, not very surprised.
Walking the streets with almost 6/5 vision is/was very very odd, highly surreal - and maade the dizziness all the worse.
Doesn't mattr much as the eye won't tolerate a lens for long, so I don't have 6.5 vision in practice. After all these years with very little, xeldom seems worth it.
And am sure I'd fall off a horse if I tried riding with it!
The medics really ouht to ave more o a clue about this - they seem to think that if they wave teir magic wands 9well, scalpels and needles....) them life will suffenly be perfect.
Incidentally, I'm one of those apparently unusual people with KC in that the KC was about the same, and so also the (lack of) vision about the same in each eye, so without lenses, had equal vision. Now post graft have very different vision - that's confusing too.
Is there any grounds or scope for having a registration system that recognises differences between eyes? - anone any thoughts?
Orry for typing - just put antibiotics in and world all foggy!
Rosemary

[John Smith]

Hmm... a lot to consider here.

Speaking personally, I would think that we need some criteria which can be scientifically measured. The current rules that Lynn posted make reference to blurred areas of vision, but not areas of double-vision.

Can the amount of ghosting be quantifiably measured? If not, then we could focus (sorry ) on getting the manufacturers to produce some machine (or at least, software for existing hardware) which can map the number of ghost images on the retina projected from a point of light at various locations through the cornea. I think that without the objective measurement of our impairment, we would find any form of "voluntary" registration difficult. Hopefully, such a machine would be able to aid a decision about differing levels of ghosting affecting useful vision at different levels of ambient light also.

I'd like to see some form of permanent registration, but part-time. This ought to cover all of the hours where a patient is not wearing contact lenses (not sure whether the absence of specs falls into the same category), so the registration would cover for example only wearing lenses for a few hours a day, and not at all at weekends.

The points that have been made above about failing to insert a lens because of some phobia or other physical problem should carry the same weight as not having a lens because of intolerance/pain.

[Lynn White]

John,

You are getting into too much technicality here. The current Snellen guidelines are actually often interpreted at the discretion of the ophthalmologist as a lot depends on perception as well as actual retinal images. There are already machines that do measure aberrations and can indeed replicate them so that pictures can be made of what someone sees. However, one person may get on fine and not notice certain aberrations while the next person could be completely disabled by them. Also, these effects are not constant, the same person could experience variation in aberrations during recovery from grafting or CXL or INTACs.

Similarly, there does not need to be any detail of about when or where a person can wear lenses. It is sufficient to register the fact they are dependent on wearing lenses to see. You cannot possibly legislate for every person's own experience. Any one of you on these forums may well be able to wear lenses all week but not at weekends but due to Hydrops, say, suddenly go to no wear at all in one eye. The reason for developing a new registration is the fact that the visual problems are variable and cannot be tied down to numbers and times.

My tentative starting point to discuss with professionals are these two registration categories.

1) A new registration category : Variably Sight Impaired.
This would reflect the fact that patients reliant on contact lenses become sight impaired when not wearing contact lenses. It could also apply to other conditions such as MS where vision may “come and go” over time.
2) A new registration category: Temporary Sight Impairment.
This would apply to those undergoing surgery (such as grafting, retinal repair etc) or other visual therapy (such as strokes, neurological conditions) where support is needed during the rehabilitation period.

The way these are defined will be discussed amongst professionals and organisations and so what we need here is discussion of what the issues are more than anything else. Important points already brought up are:

photophobia
aberration effects (shadowing, ghosting, multiple images) when wearing CLs and in the presence of good vision
anisometropia (large difference in refraction between the eyes)
psychological issues

In the end what we need is recognition of visual problems that are difficult to measure objectively and that are variable in nature. This will then rely more on assessment by a professional rather than being measured objectively.

Does that make sense?

Lynn

[Andrew MacLean]

It makes some sort of sense to me. For years I lived with more-or-less 6/6 vision with my lenses in and less than 6/60 without my lenses, even when wearing glasses. I used to call this 'part time blindness', and it equipped me for whole time blindness when I became unable to wear lenses.

Andrew

[rosemary johnson]

Hi! - this is the message from the other thread - copied over here with help from Barbara. Thanks, Barbara.
Rosemary


I've been registred PS for a few years now.
As regards registration - I think the simplest and, to my mind, best thing to do would be simply to add a "time of correction" condition to the existing registration criteria.
FOr example, uncorrected eyesight of 3/60, correctable to 6.6. or better for no more than one hour a day, could count for blind registration.
And/or a sliding scale of time/acuity of correction ; up 60 5/5 for an hour, up to 6/36 for 6 hours a day....
I'm sure a reasonable scale could be concoctoed....
The thing no-one has yet mentioned that is more complicated still is that of light sensitivity.
One may have 6.6 vision, and not be able to use a modern computer screen at all because one cannot tolerate the brightness of a lit up screen because of one's light sensitivity. ANd so, one has 20/20 vision on paper, but needs specialist adaptive speech output and/or Braille displays to use a computer.
I don'thave an easy way to suggest for taking this into account - but clearly it can be a problem (that basically is my main problem, is why I needed to get registered as PS - to get access to the specialist access technology mit, and more to the point, fto training in how to use it) - and a graft has made it far worse for me.
Suggestions from others how how to address this welcome - I fear it is something that, though necesary` may fall between medical stools, as it were, as it is not a simple problem to diagnose, let alone treat, and in fact may not be a "eye" problem but a neurological condition.
As regards the leaflet -
I'd suggest something along the lines of ... most people with KC wi
can get good vision with the use of some of the great variety of types of contact lenses now on the market.
- and something about new technologies such as CXL, intacs, helping to keep people with good vision.
And then something like:
RarIt is rae, but occasionally happens, that people with KC do find their vision deteriorates, and they have probelsm with contact lenses, enough for them to meet some of the legal dif
sorry ,, computer prlems...
meet some of the definitions of legal blindness.
It is very very rare for KC to result in total loss of vision so the world is completely blank and lack.

Hope this is of some help. Will think about this som emore, especiailly as regards registrations.
I do think it is use to think about what registation can offer to the person - for example, access to access technology and training, or to benefits, or the famous bus pass, or.....
As regards "temporary registration" - it strikes me this ought to correspond to the DDA definition of disability - which talks of "long-term condition" generally taken as a year or more. A blindness state which might last a year or 18 months while waiting for and recovering from a graft would thus qualify, whilst a hydrops that might last 3 months ought to be counted under the same category as an illness, with doctor's notes not a disability status.
If you see what I mean.
Rosemary
rosemary johnson
Champion

[Anne Klepacz]

The two categories would certainly cover the problems some of us have or have had. And it's good that there are other conditions they would apply to - that means there would potentially be a number of other charities and support groups which would add their voice to this.
I'm sure many of us (and any optoms dealing with KC) are aware of the limitations of the Snellen chart when it comes to ghosting or multiple images. When my vision was at its worst, I could just about read a few lines of the chart because the letters stand on their own, with spaces between which the ghosting filled. But in the real world, letters are usually grouped together into words! And as soon as letters were next to each other, then the ghosting and multiple images just created a total blur. Looking at anything or anyone against a light (a window or other light source) was also a big problem, plus glare obliterating anything above it.
But as Lynn says, the main thing is to get the categories acknowledged. That would make getting help to cope with study, work and just daily living so much easier.
Anne

[dazzabee]

I too agree with Anne that two cateogories should cover the problems most of us experience, but as with anything like this, it is open to debate and suggestion. The biggest question for me is what we would want to receive from such a registration?

Is it simply recognition, do we want entitlement to benefits, is it access to low vision aids?

These are all very valid arguments and, as such, I have set-up an online poll onto the Irregular Cornea foundation website, http://www.ic-f.org. It would be interesting if everyone can vote and with thanks to members here we will be able to use this data as valuable supporting evidence at a later stage. Any questions, please feel free to PM me.

Many thanks to our members for helping the ICF group. Sweet

[BurnTheAction]

Lynn this sounds like a great idea, especially to give the condition greater standing with employees, i would defintely be interested in signing up. Keratoconus is manageable when there are no complications but when difficulties start to arise it really has a big impact on your day to day life. I had a couple of years of no real problems (luckily when i was doing my law degree!) but it's all going down the pan a bit now

I had scar removal and crosslinking in my left eye in May that went well, however i now have to wait till August for lens fitting so the eye is basically out of action for functional vision (can't see the big H on eyecharts with either eye without lenses)

My right eye isnt coping too well being my sole vision provider and as a result i have to take the odd day off work and am having some changes made to the piggyback lens. I therefore can only see properly out fo one eye for the 9 or so hours of the day i go to work and come home...not ideal!!!!!

Greater recognition of the condition as something that really affects your vision is sorely needed. I'm quite lucky as my workplace is really supportive of my current issues but greater support through low vision aids and support in the workplace for the periods of transition when grafts, crosslinking and other procedures are carried out for troublesome eyes would be great

[John Smith]

I've re-posted the poll from the IC-F website on ours! You can find it here