UK Keratoconus Self-Help and Support Association

Hello,
I'm glad I found this board because I need help. I have a down syndrom son named David, he is 19 years old. We were told last Thursday that he has Keratonus and that he is going to have to have two cornia transplants,I have to say this has really caught me off guard, you never expect to hear this-as I'm sure all of you can relate to! We are unable to try contact's because he is Down's, it just won't work. This Friday we have to go and see a specialist at the Eye Institute, They will explain all the fine details of basically what we are instore for. My question is, If anyone has had a Transplant-was it terrably painfull, If so , how long did this go on for.How long did it take till you could see out of your eye again? I want to be prepared so I can understand what he's going threw.
Thank You, Karen W.

Hi Karen, Sorry to hear about your son. However, I believe that scleral lenses (and not corneal lenses) can be fitted on someone with Downs Syndrome. These lenses cover the whole eye and cannot fall out! I think there are a couple of Mums who post msgs on this discussion page who have been amazed at how scleral lenses have helped their children with KC and Downs - hopefully one of them will see your msg and give you some info.

If you would like to find out about scleral lenses, there is information on the KC Group website - http://www.kerataconus-group.org.uk - or you can email me on sue.ingram@ntlworld.com. I have been wearing sclerals now for at least 6 years (corneals for over 25 years), but do not have Downs!

I know that it is a shock being diagnosed with KC, but please take the time to ensure that you look into all the alternatives for your son before taking the corneal graft route as this is quite final. The way that KC develops, the chances are your son has probably already had the condition for at least 2-3 years before it has been spotted - this is what has happened to most of us - so take a deep breath, have a long bath and then do some serious investigation as I am sure a few more months probably won't make alot of difference and you might actually find another solution in that time.

Do take care - we are all thinking of you and David and those of us with KC understand totally what he is going through and I am sure all the Mums of KC sufferers understand what you are going through. Please keep posting msgs and asking questions as much as you need to as there is always someone who can help. Keep smiling SUE

I have had two corneal grafts, the first in 1989 and the second in 1990. When I had the first done, I was in hospital for about a week, but I beleive this is no longer considered necessary to be in for quite so long.

The operation itself did not appear to me to take long at all, when I came round, I was asked to open my eye and when I said I had, they told me to open the other eye, not the one operated on. It was not too uncomfortable, but I had been wearing contact lenses for a while before. I had about thirt stitches which only felt like a very small piece of grit in my eye, but the eye drops I had made it a lot more comfortable. I wore sunglasses for a while after, but within a week or so, I was back to being able to drive.

The recovery is dependent on the patient and I consider myself Mr Average and the second eye was just an ovenight stay.

As for the large number os stitches, it allowed for easy adjustment of the cornea as it healed to keep any astigmatism to a minimum. Afetr 18 - 24 months, I did nt need any eye correction for about 7 years, but now I wear glasses with quite a thin lens.

From personal experience, do not worry about the operation, it is not too uncomfortable and the irritation soon goes.

Hope this helps, if you would like someone to talk to, please feel free to e-mail me; gdbeynon@hotmail.com

Regards

Gareth

Hello Karen

Sorry to hear that your son is having problems with his eyes, it must be very frustrating for him.

If you look in the section headed 'members' and go to page 5 entry number 97 is Kate Farminer, whose son Dale, also has Downs and KC. You can look up some of her posts from here (if you click on her name, it will show a few more details and a line showing something like 'view all posts'

Also if you go back through the pages of the discussion forum to the old 'quick topic' posts look under - Quicktopic posts:Jun2003 and on page 4 you will find an older post from Kate talking about her son.

If you have a little time to search you may find more around about this time.

Best wishes

Susan

Just to make some of Susan's "links" easier to reach, here they are as actual links (if you're using the web site, anyway!)

• Kate Farminer's posts
• Kate's older posts
• The Search Page: just enter "Downs" in the "Search for keywords" box.

Thanks John.

Hi Karen
If you e-mail me direct anneklepacz@aol.com I can send you a helpful leaflet produced by Gill Levy of the Multiple Disabilities Unit at the RNIB on 'Keratoconus in people with learning disabilities'. Look forward to hearing from you.
Anne

Hi Karen,
So glad you have found this site and hopefully we can offer you some support. I totally support what Sue wrote about scleral lenses. i believe Dale's Mum puts them in for him and he's a much happier chap with them. Dale is about the same age as your David.
Whilst the actual graft operation is not too traumatic I think you might find the aftercare difficult for David - no lifting or rubbing of eyes, lots of drops to put in etc. And after all that I still have to wear sclerals after grafts. The result is very variable. Some people can see without glasses afterwards or with glasses rather than lenses. In my case my unassisted vision is worse and I get less correction with glasses than I did before, so please don't be fooled by promises that a graft will solve all David's sight problems. I was promised better vision!! I don't think it is possible to predict the visual outcome of a graft.
Please take Ann's advice and consider other possibilities before going for grafts. Scleral lenses are very comfortable and easy to learn to insert, even on someone else!
If you would like to talk directly about the op and sclerals, you are welcome to call me on 01235 528974.
Best wishes,
Janet

My son is nearly 19, KC was diagnosed when he was 15 and we too thought lenses were not an option - Dale is a difficult character - charming but difficult!! We accepted the idea that he was going blind for quite a while till i recovered from the grief and got back into Warrior Parent mode - found out about scleral lenses, located them for Dale Jan 03, by Jan 04 he was asking for them before Id even woken up each morning. Now he is a lens wearer evry day and his eyesight better than its been since he was 10. From 2/20 to 14/20 ! Dont close the door on any options - te answers are different for everyone. Do you need more info about scleral lenses? They cover the eye resting on the white area and are shaped to arch over the cone, the fluid they hold acts as the lens and largely corrects the vision. Weve got insertion time down to 20 seconds!! Crack team!!
Kate in Gloucester GB