UK Keratoconus Self-Help and Support Association

Until Sunday I had never heard of ‘keratoconus’. My daughter, who has Down’s Syndrome, developed an acute hydrop and since then we have been back and forward to the eye clinic. Her eye still looks pretty bad but its on the mend. The staff in the hospital have been excellent. Helen solves the DS problem by being very uncommunicative so it was difficult to figure out what was going wrong, how she feels etc etc. At the moment her other eye looks OK but I am pretty nervous about it. What I can’t understand is why the hydrop happened out of the blue – I know it is ‘associated’ with DS but this doesn’t really explain it. Of course, the sub-text is what kinds of things might be done to reduce the chances of it happening again in either eye.

There aren’t so many references to hydrop on this site – or any site - so any useful input would be much appreciated.

TIA

John.

OK - I have just discovered that the term to use in the search engine is 'hydrops' - shows you how new I am to it all.

Still don't understand why though

john

My son (Downs) is 19 now and in the 4 years since first hydrops - 'out the blue' as you say - we have come to know enough to get by! happy to advise.

would be pleased for you to ring evenings on 01452 421328

The first year seemed pretty dark but with good quality help Dale now is back with good vision (scleral lenses ) and is happier than he's been since he was 10. Can see small things for the first time ever - and that includes the expression o n others' faces...

Known as 'challenging' , autistic, partially sighted, language impaired etc etc he's just back from watching the Villa match with his Dad!!

kate farminer