UK Keratoconus Self-Help and Support Association

Hello everyone My daughter was diagnosed with KC a few weeks back we have jusst returned from the hospital to be told she will need to have a cornea graft this is a very worrying time for us as She does not understand all that this will entail, we are worried after the op that she will rub her eyes touch her eyes and no matter how we tell her not to do something she would not understand fully the implications of what might happen if she rubs her eyes,
Lauren is 26 yrs old and we have been lucky that she does not have any other medical problem like heart condintions ect
I did read that it is quite common In downs Syndrome to have this desease Lauren has it in both eyes and her right eye is the worst she can hardly see and her left eye is deteriating (spelling?) we have tried to explain to her but it is difficult is there anyone else who has had this operation that also has a Downs Syndrome any information would be gratefuly exceppted

Thanks you

Ingrid

Hello Ingrid and welcome to the forum,
You're right - KC is more common in people with Downs Syndrome than in the 'general' population and some have gone on to have a corneal transplant. After care is very important including finding strategies to prevent eye rubbing after the operation. You'll find much more information on www.lookupinfo.org which is a website about sight problems in people with a learning disability (run by an organisation called Seeability). They also have a telephone helpline and might be able to put you in touch with another family with experience of a corneal transplant if you don't get a response here.
And if you e-mail your postal address to anne@keratoconus-group.org.uk there's more info we can send you.
There are some parents of children with Downs who have posted here in the past, although not for a year or so. But if you put Downs Syndrome into the search engine on this forum, you should find them and you might be able to contact them by using the PM facility on the forum.
It's obviously a worrying time for you all, but if you arm yourselves with as much information as you can, I'm sure you'll be able to overcome the difficulties.
All the best
Anne

Thank you foe your reply I will certantly be in touch with these groups as you say we need as much information to help us and Lauren through all this Lauren is abbiously not fully understanding what it all means so hopefully we will with all the info we get help xx thans again