Soft lenses option

[Lynn White]

Hi Johnni

As usual, nothing is as simple as that! Not everyone fits soft lenses for keratoconus and sclerals are not much fitted outside of hospitals as they are so expensive. You cannot assume that your own optician can actually fit either of these types of lenses, as in may he not have equipment, trials sets etc.Sometimes I do have to remind members here that if they get fitted on the NHS in clinics, the range of lenses available is quite large and expense doesn't come into it. High Street opticians generally do not have enough throughput of KC patients to carry a whole range of lens types. I would particularly point out that many hospital departments do not fit sclerals either, so please do bear this in mind when you suggest them. Anyone outside major cities will generally have to be referred to a more central location to get fitted with them, so its worth pointing this out when people ask about lens types.

So the first step is to ask you are fitted in a hospital department or a HIgh Street optician? If the former, then if they cannot fit you, say with sclerals,they can refer you to somewhere that does. If on the HIgh Street, then it is certainly best to discuss this with your optician first. If he says that he doesn't think soft lenses are successful, then its unlikely he is going to want to fit them. If he is willing, then its actually better to stick with him because there is nothing worse than skipping around practitioners and not telling the right hand what the left is doing! If he won't then you will have to find someone else and preferably someone who is willing to work with your RGP fitter in co-management.

To be fit any type of contact lens for KC takes a certain amount of skill, dedication and most of all, time on behalf of the fitter, so you really won't find alternative fitters by simply wandering down your High Street and trying other opticians.Look at the opticians list on these boards http://www.keratoconus-group.org.uk/optoms/index.php and this will guide you to professionals who are willing to fit keratoconic patients.

Lynn

[GarethB]

Johnie,

You sound like you're in a similar position I was in but I wanted a soft pair of lenses just for motorsport. What we have found for my specific case is that to get reliable vision I have had to completly to the soft side. This is becasue the demoulding of the cornea was inconsistant and this was at a time I could tolerate RGP's pretty well.

Very quickly I got good vision with the soft lenses so I was fine to drive and play sports and as things have settled the past couple of months I now have perfect vision with the soft lenses.

You have summed it up pretty well.

thx for the replies everyone!
I guess i have concluded that the advice i have been given & the nature of our condition i have to try & see how i feel with soft/scelerical lenses (trial & error esq).

I've found if i need to see my optom before the next scheduled appointment I have been able to call the hospital and bring things forwards so I would like to think you would be able to do the same.

As the soft lenses actually surpass the RGP performance wise I hvae kept my RGP's as a back up. I've also kept the soft lenses I've had as my eye goes through the demoulding so if there is a problem I have an old lens which although not as good as the current lens does at least give sufficeint vision to cope until a new one arrives.

The other option is prtective eye wear for sports.

[rosemary johnson]

For those of you who were not at the AGM:
there was quite a discussion on the benefits to some people with KC of scleral lenses, and the unevenness of supply, often for the wrong sort of reason (dismissed as "old fashioned" by people who don't really know the latest advances and how useful they can be).
Arising out of this was a strong urge to promote their use and availability and encourage more hospitals/clinics to learn about fitting them and offer the service.
Also, to produce a list of people/clinics/hospitals who do currently fit sclerals, so people can more easily find an appropriate fitter.
We all hope, an expanding list...!
Rosemary