UK Keratoconus Self-Help and Support Association

Please may I ask why it states this in the KC group literature:

"Although no one can be sure how far keratoconus will develop in an individual, the condition does not cause blindness".

This does concern me because this is a common misconception written in most literature on KC. There are many members here who have been registered as blind or partially sighted and there's the 'part-time partial sight' for many lens wearers. Although KC may not cause all out total permamnent blackness blindness, I don't feel it's accurate to state that it does not cause blindness when people are sometimes registered.

There are so many difficulties in getting this condition taken seriously because we have no formal recognition in the variation of our condition, hence why so many people here have experienced discrimination in education and the workplace. I've watched health professionals look of disbelief on speaking of graft rejection for example because there have been journals with articles stating that because there is no direct blood supply to the corneas there's no risk of rejection, we of course know different! There's also no recognition that graft failure always remains a unquantifiable risk and the 'now I see you now I don't' with lenses is just beyond most peoples comphrension, even more so if you use glasses on top of lenses for reading.

Thanks for raising this Lou, as someone who had in teh back of her mind for months 'KC wint leave me blind' then to be told 'your now partially sighted' to say that I was extremly mixed emotions doesn't come close.

I said to my consultant 'but this is inacurate' - arugh sorry cant wrote any more a lil tearful
x

Actually, Lou, this has always puzzled and offended me. When I was first registered blind the fact that the KC group stated with such assurance that my condition would not lead to this end caused unnecessary turmoil. I was later taken off the register of blind people, only to be put back on it after a short time.

I came close to leaving the group at that time, I felt unsupported by the very people who were trying to offer me support.

I have raised this matter many times and while people do say that they know what I mean, they never do anything to remove the offending remarks. I guess I have just got used to paying no attention to that particularly misleading comment.

To the increasing number of people who come here and who have been registered blind, we do know what this means, we do understand your daily struggle and we do hope that an intervention will be found that will restore your sight. I, like you, have known the daily struggle but thanks to cornea grafts I now have better than 6/6 vision.

Andrew

May I respectfully ask the committee to discuss this issue with a view to ammending the literature

Thanks for pointing this out, Lou.

Whilst I think that the original point of the sentence in question was to reassure that the total blindness would not occur, I can see how this can be interpreted differently; and I'll raise it at the committee meeting next week.

Regards,

John

Thanks for raising this again and we'll certainly discuss at the next committee meeting. To put it in context, the sentence comes from the basic information booklet on KC which most often goes to people who have been recently diagnosed (there is a very short extract from the booklet on the home page of this website at 'What is keratoconus'). The booklet is written for us by one of the principal optometrists at Moorfields Eye Hospital, with input from other KC specialists at Moorfields. The KC Group is also given the opportunity to comment and make suggestions on the text and the booklet is currently being updated and revised (the new version will include paragraphs on Intacs and Crosslinking) so if there are other changes to suggest, now is the time!
The relevant paragraph in the latest booklet version is -
"What is the prognosis? (Will I go blind?)
Although no one can be sure how far keratoconus will progress in an individual, the disease does not cause blindness. With the current treatment available most people should be able to maintain vision and a normal lifestyle as a result of the condition. However good vision may be variable at times as the condition progresses and contact lens tolerance varies."
My experience of taking phone calls over the years from people who have been recently diagnosed with KC and find the KC group, is that some people (and perhaps especially parents of KC children) are fearful that the condition will lead to permanent blindness. As John says, the purpose of that paragraph is to allay those fears (the equivalent of Andrew's frequent advice to newbies of DON'T PANIC). And while it's true that a small minority of those with KC will have periods of time when their vision may be very limited eg because of hydrops, because they become intolerant to contact lenses, or when they are on a waiting list for a graft, it's unlikely that this will last more than 12 months and may well be less. Out of the thousands of people who have contacted the group over the years, I can only think of 2 who experienced total loss of vision in one eye due to repeated graft rejections and I would hope that is increasingly unlikely to happen these days with better transplant techniques. And of course the majority of people with KC won't ever experience a period when they might be eligible for registration as blind or partially sighted.
If people do think that the information in the booklet is misleading, do you have any suggestions for how this paragraph should be phrased without being misleading in the other direction and potentially scaring people at the start of their KC journey? We can certainly put forward suggestions to the authors of the booklet for consideration.
The topic of registration is something else again - even people who would benefit from temporary registration while they are waiting for appropriate treatment very rarely are. But that's another issue which we need to get more recognition for.
Anne

I'd be disapointed if the new version of the booklet perpetuated the lie that keratoconus does not cause blindness; we have no particular right to redefine 'blindness'. There IS a legal definition of blindness and this sort of sight loss ( however rare ) can be caused by keratoconus.

One way round the issue would be simply to omit the reference to the degree of sight loss that can result from keratoconus.

So that's my twopence worth.

Andrew

I don't agree with you Anne, "temporary" impairment was not very temporary when it was 2 yrs in my youth, but even 12 months could screw someones job or education. The variation in our vision i.e. partial sight without lenses is a significant issue within employment, education and quality of life.

When a reg at Moorfields said to me yes in these XYZ circumstances you would be blind I appreciated that honesty rather than the shifting of feet and euphemisms of "restricted vision". There is a fear of the 'b' word but we need to promote info which doesn't shy away from the best/worst case scenarios and everything inbetween. It's like when I read in a nursing mag that grafts don't reject, I am frankly incensed.

The disease doesn't cause blindness but with hyrdrops, lenses not fitting the curvature, after surgery, lens intolerance or lens handling intolerance can all equal partial sight as you know, whether it's 12 months, less or more, it's damn hard on people. How many months makes it count?

For people with restricted lens wear time and poor sight without correction it can be permanent and a choice between seeing to work or seeing kids grow up. Nothing temporary about that. Sight without correction would mean many people would fit a variable registration.

I agree with Andrew that it would be better to omit the reference rather than perputuate misinformation.

I was blind for five years and there was never a guarantee that surgery would restore my sight. It did, and Ishall be forever grateful but when I was registered there was no mention of my real blindness being 'temporary'.

This is a very important discussion indeed. Registration has many functions, not least the fact that it highlights the quality of life issues for many patient groups and brings recognition that certain eye conditions cause loss of visual function. Historically, keratoconus (KC) and other related irregular cornea (IC) conditions have always been "left out" of the registration process because of the small number of patients involved.

As Anne states, the official stand has been that most KC and IC can be managed with contact lenses, the majority have the condition worse in one eye than the other, so nearly always have one reliable eye and the small number of patients that suffer sight loss in both eyes simultaneously can be managed on a case by case basis without the need for a "special" category. However, treatment and management of people with KC and IC is changing fast at the moment and I feel the time has come to change the registration criteria.

Lets first look at definitions. Only 5 % of people registered "blind" are actually TOTALLY blind i.e. absolutely no perception of light. Accordingly, this definition was changed to "severely sight impaired" a while back. Similarly, "partially sighted" is now "sight impaired". This is not some PC rewording by bureaucrats, it is a real attempt to more correctly describe what sight loss people suffer.

Here is the official criteria for blindess:

Generally, to be registered as severely sight impaired (blind), your sight has to fall into one of the following categories, while wearing any glasses or contact lenses that you may need:

visual acuity of less than 3/60 with a full visual field
visual acuity between 3/60 and 6/60 with a severe reduction of field of vision, such as tunnel vision
visual acuity of 6/60 or above but with a very reduced field of vision, especially if a lot of sight is missing in the lower part of the field.

As you can see, this does NOT require you to have no vision at all. It also says you have to be wearing the contact lenses "you may need". It does NOT take into account the fact you may only be able to wear these lenses for a limited time in any given day, which is where this completely falls down.

Official "partially sighted" registration

To be registered as sight impaired (partially sighted) your sight has to fall into one of the following categories, while wearing any glasses or contact lenses that you may need:
visual acuity of 3/60 to 6/60 with a full field of vision
visual acuity of up to 6/24 with a moderate reduction of field of vision or with a central part of vision that is cloudy or blurry
visual acuity of up to 6/18 if a large part of your field of vision, for example a whole half of your vision, is missing or a lot of your peripheral vision is missing.

As you can see, a lot of this is based on eye conditions such as glaucoma which cause sections of your field of view to disappear completely. None of it addresses contact lens wear for KC nor does it address the temporary changes in vision that people undergoing INTACs/CXL/ grafts suffer.

On April 29th 2010, the major Optical Bodies officially joined in forming an Optical Confederation (see press release) which aims to speak with a united voice for patients, professionals and the optical sector.Within this Confederation, I am involved with Low Vision issues and am now officially looking at this situation of registration for KC and IC. My first priority is listening to YOUR input.

Here are some suggestions and ideas that have been mooted:

A new registration category called, perhaps, "Variable Sight Registration" which would apply to those who rely on contact lenses in order to function visually. This could be entirely voluntary and would be more for recognition purposes. i.e. rather than having to explain to educators, employers, family friends etc about your visual issues, the registration would make this official. It could also automatically open doors to access to visual aids and so on.

Another registration category called "Temporary Sight Impairment" which could relate to period of time when one is recovering from grafts or other KC treatments.

Louise's excellent idea of a "badge" to show when you are not wearing your lenses is also something that I have been looking at (she posted several times on here about it).

What I would like to see is a lively debate all around this subject so as to get YOUR input as to what you think should be done. This will also open up the subject that Louise and Andrew have highlighted here: the need for PROPER, considered, structured advice on the condition based on modern technologies. In my many discussions with professionals about this whole subject, what strikes me is that many assumptions are made about what "patients" want or think. In the end, none of us professionals really "know" - but YOU do.

This is an incredible opportunity to improve quality of life for everyone with KC and IC. To make change happen, it has to be shown there is a need for change and therefore your views are essential to that process. Please, let me know your thoughts either by posts to this thread or pm's or emails. I would also really appreciate professionals' views as well, as whatever is discussed has to relate to the practicalities of how it will be administered.

Lynn White