UK Keratoconus Self-Help and Support Association

I have a nephew who is Hungarian and he has been recently diagnosed with keratoconus, which I have been reading up on in this excellent forum.

It seems that they cannot treat keratoconus that well in Hungary, they'd have to order lenses from the UK, so I was wondering if it might be easier to deal with it here in the UK, especially as I live over here. I;d obviously have to go private.

Can anybody help me get started. Not sure who to ask, where to go. There is Moorsfield of course, but are there any other clinics taking on overseas patients? Also, how long would the process take? I know it is difficult to gauge this.... how long is a piece of string and all that. However, if we'd go for scleral lenses for example, how long does that take to get fitted?

Any help or information would be gratefully received.

Suzy

Suzy

I think you have taken the correct course of action if you feel that there is not adequate options in Hungary.

There are a number of ways in which you can address this

a) Obtain a corneal topography of his eyes in the current state; and then bring these over with you and get seen by known and reputable optometrists whom can help (OR even get them sent to a few whom have experience in fitting KC patients)

b) Get in contact with an optometrist in the UK, and get them to perform the full analysis and then the lens fit

I think the time, cost, effort etc involved depends on your nephews KC and how advanced it is.

Sclerals, Softperms, Kerasoft, etc are all credible options to take. In my personal opinion, gving the soft lenses a first shot would be better for him all round, due to vision, comfort etc when compared against the other lenses.

Sclerlals : I know that Ken Pullum (http://www.sclerals.com) has many over-seas patients whom fly in and get seen, fitted, and dispensed anything from 3-10 days?....so thats an option as well.

Sclerals can be fitted within a day or two (but again it all depends on how far your nephews KC is) having them made etc is the time consuming part.

Do you know how far his KC has advanced? What can he see with and without correction (lenses / glasses)

But do bear in mind a few things

a) KC is unpredicatable and thus should it progress; than he will need lenses changes
b) You may need some alterations with the lenses after a few weeks as the eyes get used to the lenses

Also, there are 2 or 3 regular posters on this forum whom are Optometrists and have real world experince in fitting KC patients. It may be worth sending them a message for a steer....

Hops that helps


J

Hhmm ok, am a little confused! Sorry! Is your nephew in Hungary, and is he going to travel here to try out lenses? It is all fine to go privately if you are prepared to pay etc, but whatever treatment he might need could be very costly as in that if he needs lenses he would have to have regular check ups and fittings to make sure he gets the right ones.

If he has been recently diagnosed i would suggest looking into what they are planning to do at present, as he may be ok with glasses to begin with?

Yes if you are thinking of private, there is Moorfields, and i know they do accept patients from overseas, but you would need to look into that as in what stage he is at and what treatment he needs. Also, there are msny other private clinics etc who may be able to help.

Wishing you the best!
Sweet X x X

Thank you so much for your answers.

In reply... my nephew is Hungarian, but now lives in Israel. I recently became aware of his diagnoses, though I knew he had problems with his eyes, I did not know it was keratoconus (nor indeed what on earth keratoconus was). I think it has been going on for a while and spectacles do not help any more. I know that he has been "let go" from his job as he cannot see well enough to do it any more, so I presume it is quite bad now.

In Hungary they recommended contact lenses some years ago (not sure if scleral or corneal), but he did not have it done due to lack of time there. Now that it is getting a lot worse (eg he lost his job because of it), he realises that must do something about it. My sister's notion was to get him to go back to Hungary for fittings, but like I said, it seems that this would take a long time as the lenses would be coming from the UK. So I thought... why not shortcut this and get him to come over here instead.

I wasn't sure if this sort of thing needs a consultant opthalmologist or a specialised optometrist is enough.

Scouring the internet just now I also found http://www.sclerals.com in Hertford. Are they "reputable"?

Again. Thanks for the help!

Suzy

Suzy

http://www.sclerals.com is very reputable and many on this board have used/still do use these lenses.

However, you mentioned he was in Israel? Soflex (soft lens) are made in Israel and I beleive that there are a number of known optometrists there whom are more than capable of fitting keratconic eyes.

http://www.soflexcontacts.com/eng/index.php

Again, I would stress that you look at the options available for Contact Lenses.

To answer the other question; generally people go to an Optometrist first for eye checks, lens fitting etc...and then Opthamologist for medical eye procedures......

Wow! Thank you so much. I'll pass this on to him immediately.

When you say soft lenses... is that sclerals?

Suzy

No,

Basically there are three types of Lenses

Soft Lenses - As in SOFT material; Kerasoft, Softlex etc

Hard Lenses - As in HARD material; Sclerals, Corneas, etc

Hybrid - Mixture of both materials; SoftPerms, etc

No soft lenses are ones that most people wear to start off with, (sometimes not if you have KC though, but peoples attitudes along with optometrists are changing to this!).

They are ones that fit onto your eye and are normally very comfortable. Sclerals are much bigger, and do not touch the cornea, so will take a little getting used to! If he hasn't tried lenses before i would suggest trying soft ones first, and then hard lenses before sclerals!

Good luck!

Sweet X x X

Hi Suzy,

I agree with Jay: Israel is not the worst place in the world to have KC - I know of at least one eminent practitioner, Dr Bezalel Schendowich, based in Israel. Dr. S can often be found on the global "KC-link" run by the USA-based NKCF.

Because of the amount of after-care required, it would probably be prudent to investigate the treatment options in Israel before committing to trips to Moorfields!