UK Keratoconus Self-Help and Support Association

I don't think that keratoconus is a disability but I do think that it can leave some of us disabled.

Andrew I dont think cancer, HIV, MS is a disability but I do think that it can leave those diagnosed with a disability. Despite this the Equality Act defines them as being disabled upon professional medical diagnosis of the condition.

So why does the Equality Act discriminate against keratoconus?

The link for full information on registering as visually impaired is
http://www.rnib.org.uk/livingwithsightl ... _loss.aspx
and the full criteria are in a further link on that page.
For registration, vision (in both eyes) has to be far below driving standard and is defined as the number of lines a person can read on the Snellen chart WITH any glasses or contact lenses, which is why so few KC people are registered (even though some have limited lens wear time, so are effectively partially sighted for at least part of every day). The only person who can do the registration is the consultant who can complete the necessary form if his patient satisfies the criteria.
For many people with KC, the condition stays mild or stabilises before it becomes a 'progressive, debilitating' condition so KC is no more 'discriminated against' in the Equality Act than the dozens of other eye conditions that people have, or the hundreds of potentially disabling diseases eg rheumatoid arthritis that also aren't automatically counted as 'disabilities' when they are first diagnosed. I don't know what the rationale was for selecting cancer, HIV, MS and registered visually impaired for special treatment under the Act, but any individual with whatever condition can be covered by the Act if their condition meets the 'substantial, long-term and adverse effects on everyday activities' definition.
As far as KC in the workplace is concerned, you kindly posted for me on this forum the transcript of an excellent talk we had from AFBP employment advisers about the help that is available (which doesn't depend on registration). That post was a year or two ago. I'll see if I can find the relevant thread when I have a moment.
Anne

is defined as the number of lines a person can read on the Snellen chart WITH any glasses or contact lenses,

Please could you inform us what the specific objective measured (not subjective) definitive level of "partial sight" is

For many people with KC, the condition stays mild or stabilises before it becomes a 'progressive, debilitating' condition

Based on my experience and speaking and meeting other KCers I totally disagree with you. Like cancer, MS etc it is a progressive, debilitating disease. If it was not why are so many KCers now trying preventative treatments on offer, if you are lucky, live in the right area or can afford it, like CXL?

Being honest and truthful is positive, not negative like burying your head in the sand and living in denial and ignorance.

True the development of the disease varies in each individual but I have not heard it from anyone or read anywhere of any KCer whose KC condition has remained the same throughout their life.

Steven Williams wrote:True the development of the disease varies in each individual but I have not heard it from anyone or read anywhere of any KCer whose KC condition has remained the same throughout their life.

I think the reason you never see this on any support site or at a KC support meeting is that these people feel no need to seek help.

Just look at how many people register and post along the the likes, help, just diagnosed, what does the future hold for me?

We give advice, share expereince and in many cases wee never see them post again. Either they feel there is no need to seek further support or just by looking at posts they are getting all they need. My feeling is that for these people it is a mixture of both.

I have always said and maintained that KC is a disability.

To those that think not, or that don't have visual problems when corrected. Lucky you, can we swap eyes!

Just because your fine, its a little narrow minded to think that others might not.

With my corrected vision, and fit for driving, I still have visual acuity problems.

I can't measure out cooking ingredients, because I struggle to see the little numbers on jugs etc. I struggle to use screws/nails because I can't see the screw/nail head clearly. I can't read the cooking instructions on packaging, too much ghosting. Changes in lighting indoor and outdoor make things blur. I can't drive at night due to lots of light streaks, hiding roads and signs and other cars. I could go on and on.

My main job is driving an armoured van 12 hrs. That means that I'll drive in dark conditions, which I just can't do any more.

So yes, KC interferes with my everyday life and work life, and thus is by all definitions is a disability.

"Disabilities are not an external appearance!"

Many deaf people who can hear pefecty well don't class themselves as disabled, but those where the hearing aid only restores part of their hearing would.

With my lenses in I see perfectly well all day every day and I do consider myself luck, especiallyas my grafts approach the 25 year mark but I don't consider myself disabled. Without my lenses I am unable to rad the eye chart and fulfil criteria to be registered blind if I was unable to wear lenses and I have been close to this point 3 times in the past 25 years.

My wife wears glasses and sees perfectly well with them because she is short sighted and has astigmatism in one eye but without glasses she is unable to see the eye chart just like me, so is she disabled?

I don't have the answers, but what needs to be adressed in the Equality Act 2010 and in updating the definition of being blind is a clear definition in our case when does vision become debilitating?

The criteria of being blind date back over 100 years and you were deemed blind if you were unable to do any form of manual labour based on the lack of vision and illiteracy was high. Today there are less jobs like that about and most find it debilitating if they are unable to drive, read or see a computer screen.

As I have posted before some professionals and charities tried to bring about change but when someone agreed to be the spokesperson, everyone else took a big step back and failed to give the support they said they would. Unless these people get their act together nothing will change and it will only happen if all the charities work together.

The differing point is that Myopia and Hyperopia are static conditions, that can be corrected simply with CLs or glasses.

KC and other eye conditions are not static and are progressive medical conditions. Often requiring regular scans, tracking and custom made CLs. Even glasses can't correct the vision. Also the condition causes variable vision, even when fully correct due to the irregular cornea. A lot of people end up requiring corneal grafts and regular after care. I don't see anybody with Myopia or Hyperopia queuing up with me when i have my hospital appointments. That's the difference.

I'd be happy and content if I could just go to the opticians every year just for a new pair of glasses and see clearly again. That just doesn't happen with KC.

I can't do some of the stuff people with corrected Myopia/Hyperopia can do. Thats the differentiator.

Also, have a read of this post from the PIP thread, which GarethB has previously posted in.
viewtopic.php?f=1&t=8330#p62916

Myopia and Hyperopia aren't always static conditions, my wifes has slowly got worse over the years it just has less effect than KC.

KC came back in the host cornea in my right eye after 15 years post graft but it has been static for the past 7 years or so.

Very misleading to say alot of people end up with corneal grafts, it is less than 10% of people with KC require a single graft, that number if I recall correctly drops to about 2% who need a graft in both eyes.

We have to be very careful with sweeping statement and trying to put everyone in to a box, epecially with a condition that affects everyone in so many different ways.

The key is that KC requires more specialised treatment and monitoring for some this can be monthly, others annually or longer intervals.

I am very familier with the the link refering to me where in a nut shell I said I don't find KC debilitating at present and on over 25 years of having the condition, in total it has been limiting for periods just before and after a graft and initially when KC came back but has now stabilised. By the same token through meeting people at local support groups and confrences there are a good number who don't find KC debilitating but attend to learn more about the condition. I know that post annoyed some people which lead to abusive and offensive pms and phonecalls where if I was unavailable my familly was abused and threatened verbally.

I will however repeat one comment in that thread I made which is we are here to share expereinces and views. As such when we learn more about a subject, hear both sides of the debate we reserve the right to amend our views accordingly. If people are unable to accept this, I truly believe they should think twice about taking part in such discussions.

Sorry to hear that you had all that trouble in your private life because of your opinions. I was certainly not one of them.

I value other peoples opinions, and understand the varying degrees of KC vision (from going thru them). I tend to go with the lowest common denominator, ie; if just 1 person has the worst case scenario, then there is certain probability that many others will too. I'm not worst case scenario, but I have to think that way, otherwise, im not doing justice to people with worse symptoms of the same condition.

Is there anyone able and willing to address the tough key question that I have previously raised on this thread:-

In relation to the Equality Act what is the threshold level of vision for the definition of "partial sight" ?