UK Keratoconus Self-Help and Support Association

I have had Keratoconus for about 3 yrs now in both eyes. I wear RGP lenses and they are generally comfortable day to day.
The problem is that certain activities that i do like sports i'm quite weary of as on occasion my lens has fallen out.
My eyes do tend to dry out which doesnt help but i will try some drops for them now.
What i wanted to ask is that i have been reading about soft lenses e.g Kerasoft. Is it possible to achieve as clear vison with these as with RGP and will they work on anyone?.
I remember asking my optician about soft lenses for Keratoconus about 2 yrs ago and he said they are not very effective
Secondly are they more comfortable that RGP?, i.e do thhey tend to not displace or fall out as much as RGP's?

thx in advance

Hi Johnni

I have never tried Soft lenses as my KC is too advanced, however i switched to Scleral lenses for exactly the reason you are looking for lens options.
I lost about 1 RGP a month, i have not lost a single Scleral (i think its pretty impossible to lose them)

Tom

I agree aout the sclerals - I ride (and sometimes fall off) horses, and am about to start learning to drive a pony and cart, and never had one fall out yet. never had one wash out going swimming, either.
DO check the rules of your chosen sport, though - eg. jockeys can only wear soft lenses in races, and have to wear a wrist band with a tag saying "RIDER WEARING CONTACT LENSES" if they do.
SOme people on these forums have succeeded with soft lenses for sports, so good luck if you try that route.
Rosemary

Take alook at my Kerasoft IC and K3 trial

I get the same level of vison with the soft lenses and much improved wear time. Never had a problem with the RGP's popping out during sport that is probably more to do with the type of sports I did.

If you are doing a sport where physical contact is likely (and I include sports like sqausch as i have bumped into my opponent before) is are you likely to be hit in the eye. If so you need to think about not only the lens being popped out but could it break in your eye?

Even a slightly damage RGP lens can be excrutiating painful as I have found from experience when I used to play Rugby. I have worn a damaged soft lens for a month with no problems.

Even with a soft lens, a contact sport such as the martial arts even a soft lens can be 'swept' out of the eye. Sports goggles will help with this, just google Sports Goggles and you get a wide range to choose from. I have a pair for squash because an elbow and a squash ball are a perfect fit for the average eye socket. Plus if a lens were to pop out, it is caught in the glasses so easily retrieved and replaced.

As Rosemary saays if you are competative check out the rules, many sports will unaccept RGP lenses but are OK with softs. Some ban any type of vision correction.

I wen down the soft lens route so I could regain my MSA licence for motor sport.

Hope this helps.

When they (the makers) say "the soft option" they should also add "for some cases", as not one lens works as a "soft option"

JB

Justbrowsing

You are of course right that no single lens has yet managed to be suitable for all keratoconus sufferers (before or after a graft).

For my part, the best lens I ever tried, was a scleral (before my graft), and now (post graft) I wear a rigid gas permeable corneal lens in my left eye with glasses for my right eye. They have tried to fit a soft lens to my left eye, but due to 'Dry Eye' this has not worked yet. I remain hopeful, and in the meantime I continue to get good vision with my rgp lens.

I think you have already found the clinical trial post about a new and larger hard lens.

I think we all welcome the continued efforts of lens developers to increase the range and variety of lenses and lens materials. Someone once described keratoconus as a 'bespoke' disease, making the point that we are all different, and that a standard solution will not suit everybody.

Meantime, I am sure that you are as pleased as I am that many people who come to the forum have found within the extensive range of options available these days, a lens or other treatment that perfectly suits their KC, so that they have a full and active life supported by good corrected vision.

All the best

Andrew

One tip which I have for wearing RGP's for sport is to wear a soft lens over the top of the RGP. My g'friend is an optom and I have run this idea past a number of optoms and my corneal surgeon on a number of occassions. They all seem to think it is a very good idea.

What you do is find a suitable soft lens (silicone hydrogel) with little or no power. Daily disposable lenses seem to work, but you and your optom will need to make sure that enough oxygen gets through two lenses at once.

What I do is put my RGP lens in first and let it settle. I then insert the soft lens over the top of the RGP, so I am wearing 2 lenses in my eye at each time. I tend to find that the soft lens keeps the RGP lens safe and in over 4 years of football, I have not had a problem. As I only wear it for an hour or so, this seems to suit me fine.

Maybe this would suit you, although I dont know what sport you do. Ask your optom about it and see if this is suitable to you. I think its a great idea and has allowed me to play football regularly without any adverse effects so far!!

Good luck

Hi Johnni

You asked...

What i wanted to ask is that i have been reading about soft lenses e.g Kerasoft. Is it possible to achieve as clear vison with these as with RGP and will they work on anyone?.
I remember asking my optician about soft lenses for Keratoconus about 2 yrs ago and he said they are not very effective

To answer your point... there is not one absolutely fool proof lens for all keratoconics (If there was, this forum would not be necessary!).. KC is a designer condition .. it needs individual attention. So for some people RGPs are the answer. for others its sclerals, hybrids, Soclear... the list goes on, including softs.

Soft lenses that are designed for keratoconus are not the same as soft lenses that "normal people" wear (which are much more flimsy and wouldn't "mask" the distortion produced by keratoconus). Equivalent vision to RGPs is perfectly possible (but not in every case) and they are generally more comfortable than RGPs. To put that into perspective... I saw somebody yesterday who got better vision in softs than RGPs. For another patient , it may be another lens entirely!

As you have seen by the other posts, softs can be either stand alone/dedicated KC designs or be part of a piggy back system. To be honest, you can't tell until someone tries them out on your eyes!

In the end.. its what works for YOU that counts.

Lynn

Johnni,

I didn't see this part of your question first time round.

Johnni wrote:I remember asking my optician about soft lenses for Keratoconus about 2 yrs ago and he said they are not very effective

My hospital had similar views but in March I went for my routine check up wearing the K3's I'd got elese where (see link in my original reply) they confirmed the level of vision matched the RGP's they had originally supplied me with. I showed them the topographies regarding the demoulding of the cornea the longer I go without RGP's and said they had probably been dismissing the soft lens option too soon and should have followed it up further.

No harm in discussing this further with your optom.

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).
Regarding the K3 lenses do i have to consult my optician before i try them? i.e is he the only one that can prescribe me with soft/scelerical lenses as i see him every 7-9 months so if i want to chop & change lenses i don't know how it will work.
At the moment i am happy with my RGP with comfort levels & vison. It's only on certain activities that i have problems with so i am looking for 'stand in' pair of lenses just to use for those activities. If my vision is'nt better with soft's compared to RGP i would'nt mind as i won't be using them as much, for football etc. If they are just as good or better then maybe i will get rid of my RGP's alltogether.
Anyone else do this whereby they have a different type of lens in reserve and wear on occasion.